internet ethics research paper

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Peer-reviewed

Research Article

Ethical issues in using the internet to engage participants in family and child research: A scoping review

Roles Investigation, Methodology, Validation, Visualization, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia

Roles Conceptualization, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Validation, Writing – original draft, Writing – review & editing

Affiliations Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia, Parenting Research Centre, Melbourne, Victoria, Australia

Roles Investigation, Validation, Writing – review & editing

Roles Investigation, Methodology, Writing – review & editing

Affiliations Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia

Roles Investigation, Writing – review & editing

Roles Conceptualization, Funding acquisition, Methodology, Resources, Supervision, Writing – review & editing

Affiliations Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia, Queensland University of Technology, Brisbane, Queensland, Australia

Roles Conceptualization, Funding acquisition, Methodology, Writing – review & editing

Affiliation Department of Communications and Media, La Trobe University, Melbourne, Victoria, Australia

Affiliations Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Victoria, Australia, School of Public Health, The University of Queensland, Brisbane, Queensland, Australia

Affiliation La Trobe Law School, La Trobe University, Melbourne, Victoria, Australia

Roles Conceptualization, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Validation, Writing – review & editing

• Stacey Hokke, 
• Naomi J. Hackworth, 
• Nina Quin, 
• Shannon K. Bennetts, 
• Hnin Yee Win, 
• Jan M. Nicholson, 
• Lawrie Zion, 
• Jayne Lucke, 
• Patrick Keyzer, 
• Sharinne B. Crawford

• Published: September 27, 2018
• https://doi.org/10.1371/journal.pone.0204572
• Reader Comments

The internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.

Academic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.

Sixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children’s vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.

Conclusions

Engaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.

Citation: Hokke S, Hackworth NJ, Quin N, Bennetts SK, Win HY, Nicholson JM, et al. (2018) Ethical issues in using the internet to engage participants in family and child research: A scoping review. PLoS ONE 13(9): e0204572. https://doi.org/10.1371/journal.pone.0204572

Editor: Yih-Kuen Jan, University of Illinois at Urbana-Champaign, UNITED STATES

Received: January 3, 2018; Accepted: September 11, 2018; Published: September 27, 2018

Copyright: © 2018 Hokke et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the manuscript and its Supporting Information files.

Funding: This work was funded by La Trobe University through the Transforming Human Societies Research Focus Area Scheme 1, 2015; Associate Pro Vice Chancellor (Research), College of Science, Health & Engineering; and Pro Vice Chancellor (Research). Authors SH, NJH, NQ, SKB, JMN and SBC were supported by the Roberta Holmes Transition to Contemporary Parenthood Program (Australian Communities Foundation, Coronella sub-fund). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Parents and children in contemporary society are facing new and multiple demands that may affect their wellbeing, and limit parents’ capacity to support their child’s healthy development [ 1 ]. High quality research is key to understanding these changes and to providing a sound evidence base for the development of policies and programs to support families, parents and children. Being able to engage families from diverse backgrounds and in sufficient numbers is critical to the completion, scientific validity and financial viability of such research [ 2 ]. However, a major research challenge is the ability to attract and retain participants over time to assess long-term outcomes [ 3 ], particularly within the context of increasing family time pressure and population mobility.

Engaging participants in research can involve: recruitment (strategies to invite potential participants and enrol them into research); retention (strategies to ensure ongoing participant involvement to reduce attrition); and tracing (strategies to find and re-connect with participants who have been lost to follow-up). Conventional approaches to engage families and children in research (e.g., telephone calls, mail-outs, print media, face-to-face) are not only expensive and labour intensive [ 4 , 5 ], but are increasingly ineffective in the face of contemporary mobile populations and changing communication patterns [ 6 ]. For instance, the use of random digit dialling to recruit participants is less effective as many families now live in households without a fixed telephone [ 7 ]. Recruiting families via address-based sampling is also difficult in the context of increasing residential mobility, which is high among young and socially disadvantaged families (e.g., experiencing poverty, unemployment, relationship breakdown) [ 8 , 9 ] who are often the target of research. Maintaining contact with mobile families can be challenging in longitudinal research, especially if there are lengthy periods between data collection waves or if a prospective follow-up study was not part of the initial research design [ 10 ].

Increasingly, child and family researchers are using online methods to recruit, retain and trace participants [ 6 , 11 – 13 ]. In developed countries, internet access is almost universal among households with children, with most connecting online via mobile or smart phones [ 14 , 15 ]. Children and adolescents have among the highest rates of internet use and frequency of use compared to older age groups, and social media use is ubiquitous among adolescents [ 16 ]. Parents are also increasingly online [ 17 ]. More parents access Facebook on a daily basis than non-parents, with usage tending to increase during the transition to parenthood [ 18 , 19 ].

As a research tool, the internet provides alternative strategies to reach participants where they ‘live’, and presents an ostensibly efficient and cost-effective solution to the challenges associated with conventional methods of participant engagement [ 20 ]. For example, study invitations can be advertised on websites or circulated via email to a large audience quickly and at little expense. Advertisements on social networking sites such as Facebook can be specifically targeted to identify eligible participants based on their personal characteristics or interests. Evidence suggests that child and parent samples can be recruited more efficiently and at a lower cost online than offline, and may result in a sample that is representative of the target population, or which has similar representativeness to studies using offline recruitment methods [ 21 – 23 ]. The internet also has potential to reduce attrition and non-response bias in longitudinal research with children and parents [ 13 , 24 , 25 ]. Posting on study websites or directly messaging participants on social media can maintain contact with study cohorts and send calls-to-action at appropriate times (e.g., for measure completion), while internet search engines and the search features of social networking sites can be used to trace participants who have been lost to follow-up.

Given the ubiquity of the internet and smartphone technology, the public availability of online communities and the potential cost and time efficiencies, it is unsurprising that family and child researchers are increasingly harnessing the internet to engage participants. As with all new research methodologies however, consideration needs to be given to the ethical issues surrounding its use. It has been argued that maintaining privacy and anonymity and obtaining informed consent are more complex in online research than offline research [ 26 ]. As a relatively new research tool, engaging participants online may also present issues that may be novel or less apparent. For example, the internet, and particularly social media, introduce new ways to access data and personal information. This raises questions regarding the ethical appropriateness of accessing digital data or online profiles for research purposes, and how the ethical principles embodied in codes of conduct (e.g., [ 27 ]) are upheld.

Ethical issues may be particularly pertinent in online research with parents and children. Such research may be sensitive in nature and involve vulnerable populations. Communicating with and engaging minors in an online setting can present further challenges, such as how researchers accurately determine a child’s capacity to consent to participate and the process of obtaining parental consent. Within this context, it is imperative that researchers, ethics committees and institutional review boards are aware of the advantages, limitations and ethical challenges of recruiting, retaining or tracing participants online. While discourse on internet and social media research ethics in family and child research is emerging [ 4 , 28 ], this may not be empirically based. In addition, there is a lack of definitive national regulatory guidance on internet research ethics. To date, little research has systematically assessed the ethical issues encountered or considered by those using the internet to engage participants in child and family research. It is unclear what ethical issues are considered by researchers in this setting and whether these ethical concerns differ from those in offline research, or in research not involving children and parents. It is also unclear what ethical guidance family and child researchers follow when recruiting, retaining or tracing participants online.

To address these gaps, a scoping review was conducted. Scoping reviews aim to synthesise and narratively integrate evidence when there is a large and diverse body of literature that has not been comprehensively reviewed [ 29 ]. They aim to map the extent, range and nature of research, and identify key concepts and gaps in the literature to inform future work [ 29 , 30 ]. Scoping reviews differ from systematic reviews, in that they are often broader in focus, include a range of study designs and methodologies, and typically do not appraise study quality. They differ from narrative or literature reviews as they follow rigorous, systematic methods to identify literature and require analytical re-interpretation of evidence [ 30 ].

This review was conducted to gain an understanding of the ethical issues associated with the use of the internet to engage parents, children and families in research, and to identify available resources to support the ethical conduct of family and child researchers in the context of online research. The review aimed to assemble and summarise the ethical concerns and considerations reported in available literature and identify ethical issues unique to using the internet to recruit, retain and trace families and children in research. A systematic search of academic literature was conducted to answer the following research questions: (1) How is the internet used to recruit, retain and trace participants in child and family research?; (2) How are ethical and consent procedures reported?; and (3) What ethical concerns are identified? In addition, a general grey literature search was conducted to determine: (4) What ethical guidelines are available and being used to inform internet research?

A multi-disciplinary research team was established to undertake the review, with expertise in child and family research, public health, psychology, media and communications, and law. The scoping review was conducted according to a 5-stage framework [ 29 – 31 ]: (1) identifying the research questions; (2) identifying the search strategy; (3) study selection; (4) charting the data; and (5) collating, summarising and reporting the results. These steps were applied separately to searches of the academic and grey literatures.

Academic literature search

To address Research Questions 1 to 3 above, academic literature was searched using four categories of keywords: engagement strategy , internet , ethics and focus sample ( Table 1 ). Boolean search operators “AND” and “OR” were used to combine keywords between and within categories. Searches were conducted in the following electronic databases selected to ensure maximum coverage of family, child and internet research: Scopus, PsycINFO, Embase (includes Medline), ERIC, CINAHL and Informit. As the Scopus search generated over 70,000 initial hits, results were refined by applying additional search limits (see S1 File ).

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https://doi.org/10.1371/journal.pone.0204572.t001

Articles were eligible for inclusion if they were written in English, published between January 2006 and February 2016, and used the internet (e.g., social network sites, websites, email, listserv, blogs, forums, applications, online research participant registries) as a method for recruiting, retaining or tracing families, parents and/or children in research. Studies that used the internet for data collection but not participant engagement were excluded. Studies that used online residential listings were also excluded as these listings are typically used for compiling subsequent mail-out or door-knocking recruitment strategies. Included articles could be original research, reviews, discussion papers, outcomes papers, protocol papers or editorial letters. Books, book chapters and thesis dissertations were excluded. Published conference abstracts were used to search for subsequently published full-text articles, which were included if they met the inclusion criteria.

Upon completion of the search, duplicate articles were removed and search results were screened by title and abstract for eligibility. Articles passing the abstract screen were then retrieved in full-text and further screened for eligibility. Screening of abstracts and full-text articles was undertaken by a primary reviewer (NQ) and confirmed by a second reviewer (SH). Conflicts were resolved by consensus with a third and fourth researcher (NJH, SBC).

Articles were summarised, and characteristics were charted, including: author(s), year of publication, geographic location, article type, study participants, method(s) of participant engagement, type of internet technology used, study approval and consent procedures, ethical considerations and concerns, and authors’ use of ethical guidelines and resources. Methods of participant engagement were defined as follows: recruitment —strategies to initiate contact and invite potential participants; retention— strategies to maintain contact with participants in longitudinal research; and tracing —strategies to find and re-establish contact with participants in longitudinal research who have been lost to follow-up. Reference lists of full-text articles were searched and eligible articles charted. Each article was analysed by a primary reviewer (SH) and extracted data confirmed by a second and third reviewer (NJH, SBC). A narrative account of key findings is presented according to each ethical consideration identified.

Grey literature search

Ethical guidelines and recommendations produced by governments, research institutes or professional associations are documents classified as ‘grey literature’. This term refers to reports, theses, factsheets, websites, policy documents and other information produced by government, academics, business and industry in print and electronic formats. These documents are not controlled by commercial publishing [ 32 ], may not be peer-reviewed and most are not included in academic databases. Grey literature published online can be located through internet searches [ 33 ].

To address Research Question 4, an internet search was conducted to identify guidelines to support researchers’ and human ethics committees’ ethical conduct of internet research. A general internet search was performed with the popular web search engine Google ( www.google.com ) using the following search terms: (ethic*) AND (recommendation* OR guide*) AND (internet OR "social media" OR online) AND (research). The first 100 hits (as sorted for relevance by Google) were screened by title and text and potentially relevant results were viewed. Guidelines were included if they were published from January 2006 to February 2016 and focused on any internet research methods. Information about each resource was charted, including author(s), affiliated institution(s), year of publication, format and purpose, comprehensiveness regarding the research methods raised, and the ethical considerations and recommendations discussed, including ethical issues specific to family and child research.

Summary of search process and results

The search process and results are summarised in Fig 1 . Searching academic databases identified 3,794 abstracts, with 3,537 remaining following the removal of duplicates. Preliminary screening of abstracts identified 205 articles for full-text screening, of which 53 articles met the inclusion criteria. Hand searching reference lists identified 12 additional relevant articles, resulting in a total of 65 academic articles for inclusion in the scoping review (see S2 File ). Five professional guidelines and 10 university guidelines specific to internet research ethics were identified by Google search.

https://doi.org/10.1371/journal.pone.0204572.g001

Academic literature article characteristics

The majority of identified academic articles were published after 2011 ( n = 47, 72%) and originated from the USA ( n = 24, 37%), UK ( n = 12, 18%), Australia ( n = 11, 17%) and the Netherlands ( n = 9, 14%). Most were original research ( n = 58, 89%), including four research protocols (6%) and 10 case studies (15%). The vast majority of original research papers reported using the internet to recruit research participants ( n = 51/58 articles; 88%). Using the internet to retain participants was reported in seven articles (12%; six also used the internet for recruitment) and to trace participants in six articles (10%). Four discussion papers (6%), two systematic reviews (3%) and one letter to the Editor were identified, and these primarily focused on participant recruitment. Overall, one third of the articles addressed or described specific ethical issues of engaging participants online ( n = 26/65, 40%). The remainder reported using the internet as a research tool but did not discuss ethics beyond reporting general consent or ethics approval procedures.

The participant samples for the original research articles were predominantly youths ( n = 20/58, 34%; typically ranging in age from 15–25 years) or adolescents ( n = 13/58, 22%; typically ranging in age from 11–18 years). Six studies used mixed samples of child/adolescent or adolescent/adult participants ( n = 6/58, 10%) and four longitudinal studies ( n = 4/58, 7%) traced children into adulthood. The participant samples for the remainder were parents ( n = 11/58, 19%) or families (e.g., parents and children; n = 4/58, 7%).

How is the internet used to recruit, retain and trace participants in child and family research?

Just over half of the research articles reported using a combination of offline and online methods to engage participants ( n = 32/58; 55%), with 45% ( n = 26/58) using online methods exclusively. As summarised in Table 2 , websites, Facebook and email were the most commonly used internet technologies. The use of websites or email for participant engagement appeared to be stable across the study inclusion period (2006–2016). Studies using social networking sites, such as Facebook, to engage participants were first published in 2011 and were used consistently thereafter.

https://doi.org/10.1371/journal.pone.0204572.t002

For participant recruitment , advertisements and posts on websites were the most commonly used online method ( n = 27/51; 53%). The level of detail provided about the websites used varied considerably (see Table 2 ). Nine articles (18%) named the website, 12 (24%) gave a general description, six (12%) provided no information, and four (8%) created a study-specific website for recruitment. Facebook was the most common social networking site used for participant recruitment ( n = 18/51; 35%). Five articles (10%) reported the use of another social networking site (e.g., Twitter, MySpace) and five (10%) did not name the social networking site used. Email was the next most common online method for recruitment ( n = 14/51; 27%), with invitations sent to members of electronic mailing lists, listservs, research panels and registries. Several studies sought to recruit participants by posting study information on blogs, forums and discussion boards ( n = 10/51, 20%). Less common recruitment methods included: respondent-driven sampling online, where existing participants were asked to invite their friends to participate (via email, Facebook or an unspecified method); dissemination of the study invitation through online social networks (snowballing); and the use of researchers’ own personal online networks.

Few studies reported on the success of using the internet to recruit participants in research compared to offline methods. Of the 25 studies that reported using both offline and online methods, less than a third ( n = 7; 28%) commented on how their sample was sourced or the relative success of each recruitment strategy. Four studies found online methods yielded more enrolled participants than offline methods [ 34 – 37 ] and three studies reported the opposite [ 38 – 40 ]. Recruitment sources and success rates were reported by half of the studies using either a single ( n = 8/18, 44%) or multiple methods of online recruitment ( n = 3/6, 50%).

For the retention of participants in longitudinal research, five studies used email to keep in contact ( n = 5/7, 71%), one used a study website and one became ‘friends’ with participants on Facebook. Four studies ( n = 4/7, 57%) employed both offline (e.g., mail, phone, SMS) and online retention methods [ 34 , 41 – 43 ]. Again, the success of online versus offline methods for retaining participants was poorly reported. Only one study provided details on retention rates using email reminders and a subsequent mail-out to non-responders [ 34 ] and concluded that multiple reminders using online and offline modes of contact improved overall response rates. Two studies reported retention rates of the cohort overall, rather than by the method used to maintain contact [ 41 , 42 ] and one study did not report retention rates, yet remarked that Facebook was a more effective retention tool than email [ 43 ].

Using the internet to trace participants who had been lost to follow-up was reported in six studies. The majority ( n = 5/6; 83%) combined this with offline methods (e.g., electoral roll, mail, phone, school roll). Most commonly, online tracing was done via social networking sites (e.g., Facebook, Myspace, Friends United) using the platform’s messaging feature to send private messages to potential participant matches, identified by the information publicly displayed on their profile. Researchers also traced participants using internet search engines or by posting messages on relevant websites requesting participants to contact them. Half of the six studies using internet tracing reported on the success of this compared to offline tracing methods [ 44 – 46 ]. All three concluded that social networking sites were a valuable tool to trace and reconnect with participants, with Masson et al. [ 44 ] reporting a higher response rate for participants traced via Facebook than those traced using the electoral roll and contacted via post. Conversely, a fourth study commented that social media tracing was less successful than offline methods but did not provide tracing success rates [ 47 ].

How are ethical and consent procedures reported?

The majority of research articles reported obtaining study approval from an ethics committee or institutional review board ( n = 46/58; 79%). Ethical approval was not specifically mentioned in 10 articles (17%). One article stated that the researchers did not seek ethical approval [ 48 ] and another was noted as exempt from ethical review [ 49 ].

Informed consent was obtained online in approximately one third of studies via electronic signature, email or online checkboxes ( n = 19/58, 33%) and one study obtained consent via text message [ 50 ]. Despite the online nature of recruitment, offline methods of informed consent (verbal or post) were also common ( n = 16/58, 28%). ‘Implied consent’ was reported in four studies (7%) [ 35 , 48 , 51 , 52 ] where the researchers regarded that participants had provided consent by the act of participating in online data collection. Some articles did not mention whether ( n = 12/58, 21%) or how ( n = 5/58, 9%) consent was obtained.

Of the 40 studies involving adolescents or children, 12 (30%) stated that parental consent was obtained if participants were younger than 16 or 18 years with eight of these studies also obtaining child assent. Parental consent was waived in nine studies (23%) involving adolescents (aged 11–17 years). Reasons provided related to the anonymous nature of the study, the study’s minimal risk, the perception that parental permission would deter adolescent participation, to prevent participants disclosing sensitive information to their parents (i.e. sexual identity) and national age of consent laws [ 20 , 48 , 52 – 55 ]. Sensitivity of the topic alone (e.g., adolescent mental or sexual health) had little bearing on whether parental consent was sought. Nineteen articles (48%) involving adolescents or children did not discuss parental consent procedures.

Of the six studies that used the internet to trace participants, three had previously obtained consent for follow-up, without specifying the method of contact in this consent [ 46 , 56 , 57 ]. Two studies did not have formal permission to re-contact individuals, likely due to the length of time elapsed (10–50 years) since initial contact [ 44 , 47 ], and one study did not report consent procedures [ 45 ].

What ethical concerns are identified?

Sixty percent of the reviewed articles did not comment on any ethical concerns associated with using the internet to engage participants. The remaining articles ( n = 26/65) discussed one or more ethical considerations. As summarised below, some of these issues were specific to family and child research online (e.g., parental consent, age verification, children’s vulnerability) while others are more broadly applicable (e.g., privacy and confidentiality, disparities in internet access).

Parental consent.

Several articles noted that recruiting children into research online and obtaining parental consent can be ethically complex and logistically difficult [ 36 , 58 – 61 ]. The required dialogue between researcher, child and parent is challenging to achieve in the absence of face-to-face communication [ 36 , 54 ]. Researchers must adequately inform parents, gain their trust, and reassure them that the research is legitimate and reputable [ 60 , 62 ]. This may be facilitated by personally contacting parents or by providing them access to multiple sources of study information (e.g., study websites and social networking profiles) [ 36 ]. One review article suggested utilising video or audio recordings to enable parents and children to provide consent/assent online [ 63 ]. Study authors noted that further information and guidance on best practices of gaining parental consent online are required [ 11 , 54 ].

Obtaining parental consent via post or email for children engaged in research online had several limitations. One study reported that very few children returned signed consent forms by post [ 60 ], possibly due to the inconvenience and cost of this process. There is also limited capacity for researchers to ensure that participants are sufficiently informed [ 59 ], and a risk of parental consent forms being fraudulently signed by young participants or non-parents [ 34 , 59 , 64 ]. One study reported excluding young adolescents (13–16 years) due to concerns that they might fraudulently complete the online parental consent forms themselves [ 34 ]. Given these barriers, Henderson et al. [ 59 ] recommended seeking child and parent consent via telephone. This allows researchers to separately test child and parent speak understanding of the study procedure, risks and benefits, and enables verification of the child’s age with the parent. Amon et al. [ 11 ] alternatively proposed that researchers interested in recruiting young people via social media may benefit from directly targeting parents instead of children.

Several other methods were used to obtain consent for child participation. Boydell et al. [ 62 ] encouraged participants (aged 14–18 years) to discuss the study with their parents and then included a tick box in the online consent form for adolescent participants to declare this. One study performed a mature minor assessment of interested respondents aged under 18 years by telephone [ 20 , 65 , 66 ]. This involved the researcher assessing a participant’s age, schooling, general maturity, and ability to understand the study, to determine their capacity to provide informed consent.

In some studies involving children and adolescents, waiving parental consent was considered a methodological and ethical necessity. For example, Moinian [ 58 ] conducted an ethnographic study of children’s diary entries within an online community to explore the online activities that children engaged in outside of their parents’ knowledge or control—a topic that made “the process of obtaining parents’ consent practically impossible” [ 58 , p. 56]. In other studies, parental consent was waived if parental permission was likely to deter participation [ 54 ], or would put participants at harm. For example, parental permission was waived in two US studies involving gay and bisexual adolescents as young as 13 years [ 52 , 55 ] as it was considered that young people may be placed at risk by disclosing their sexual identity to their parents. Some studies noted that where parental consent was required by law, younger participants were under-represented due to their reluctance to seek parental permission [ 61 , 67 , 68 ] or due to parents not providing consent [ 69 ]. These articles debated the age at which an adolescent should be able to give informed consent without parental permission, although this was not specifically discussed in the context of online research.

Age verification.

Verification of participant identity and age presents challenges in online research [ 53 , 59 , 62 ]. This was of particular concern in studies involving child and adolescent populations, with one article commenting that “attempts can, and arguably should, be made to verify the age of participants [in online research with young people]” [ 62 , p. 13]. Verifying participant age was also pertinent to research with adults, as minors may participate without the knowledge of the investigators [ 64 ].

To verify participant age, researchers may need to directly contact interested participants, examine the age noted on participants’ social networking profiles or employ other age verification tools [ 59 , 62 , 70 ]. While researchers recognised that age misrepresentation is not confined to online research [ 59 , 62 , 71 ], one study argued that online users are inclined to falsify their age [ 70 ]. While the use of online consent procedures requires researchers to trust that participants are who they say they are [ 54 , 64 ], it was acknowledged that postal consent procedures are subject to similar issues [ 59 ].

Participant vulnerability.

A few articles noted that children and young people participating in online research should be “generally regarded as ‘vulnerable subjects’ requiring a heightened sensitivity to issues of gaining informed consent and ensuring confidentiality” [ 72 , p. 554]; issues that were further amplified in the online sphere [ 63 , 72 ]. Children are increasingly online and have greater knowledge, confidence and reliance upon digital technologies than adults [ 63 ]. However, they may not be aware of public and private boundaries and “are reluctant to remain anonymous” online [ 58 , p. 65]. Children openly express themselves on the internet, revealing real names, locations and personal details, and may have different understandings of privacy and the permanence of online content [ 58 , 72 ]. This is ethically challenging as children, more than adults, may freely share sensitive and personal information online without realising that others, including researchers, can access their posts and information [ 72 ].

Henderson et al. [ 72 ] provided further comment on the vulnerability of children in social media-based research and the array of complex ethical issues regarding obtaining informed consent and assuring privacy and confidentiality that may be difficult for adults to grasp, let alone children. As young people are generally disempowered in research, the authors suggest that researchers consult with children across all stages of the study so that they have greater control over the research process. They also suggest, as recommended by Sharkey et al. [ 71 ], that consent of children and young people in social media-based research should be ongoing or phased rather than a one-off occurrence, involving consultation with children at all stages of the research (from design to data collection, analysis and reporting).

Across the articles, there was little discourse on whether online research elevates risk among vulnerable people compared to offline research. One article stressed the importance of considering “whether individuals who choose to engage in internet research may be more vulnerable to safety concerns than their offline counterparts”, as there is some evidence that frequent internet users have poorer mental health than others [ 59 , p. 1120]. Sharkey et al. [ 71 ] asserted that the context and medium of research itself can increase vulnerability. In their case, the online setting, the sensitive topic, the young age of participants, the lack of face-to-face interaction and the need to protect anonymity together created the ‘perfect storm’ of ethical issues, requiring careful consideration of ethical practice and how to maintain anonymity of a high-risk and vulnerable population.

Participant privacy, confidentiality and anonymity.

Participant privacy, confidentiality and anonymity were the most commonly reported ethical concerns. These concerns are applicable to internet research across all disciplines, not just those involving families and children. Articles commented on the complexity of separating public and private domains online, particularly for social networking sites and online communities that encourage users to share information [ 45 , 46 ]. The public nature of these sites was seen to be “inherently at odds with the confidential or anonymous nature of research” [ 63 , p. 62]. While the terms and conditions of social media platforms usually indicate the potential for public disclosure, it is unlikely that users intend or expect their online information to be used by researchers [ 47 , 72 ]. Additionally, confidentiality may be breached by participants inadvertently revealing their association with a study by writing on a comment board, ‘liking’ a study page, or adding a link to a study site on their own profile [ 45 , 54 ]. Researchers are therefore reliant on participants understanding and using privacy settings [ 63 , 72 ] to prevent unintended sharing of personal information and research involvement [ 47 ].

Additional issues concerned the risk of revealing participant identities via website breaches or deductive disclosure, and protecting participant privacy in studies that traced participants. Notably, and of benefit to other researchers, many articles reflected on how they sought to maintain participant confidentiality, privacy and anonymity in research conducted online and offered advice for future research, as discussed below.

Several articles discussed the risk of deductive disclosure of an individual’s identity for research conducted within ‘open’ discussion boards, forums and web pages [ 47 , 58 , 62 , 64 , 71 ]. Using a search engine to trace phrases or quotes from a research report or publication may reveal participants, thus breaching anonymity, confidentiality and privacy. Such risks may be reduced by omitting, anonymising or paraphrasing quotes [ 71 ], albeit potentially at the expense of the integrity of the original post. Researchers expressed concern that data that have been de-identified for reporting may not remain so with future technological developments [ 72 ].

Regarding online tracing, several articles describing the use of social media to trace and re-connect with lost participants questioned whether searching for a participant on social networking sites was a violation of online privacy [ 44 , 47 , 72 ]. One study that traced participants online stated that they only found information about participants from sites that individuals made publicly available [ 44 ]. The authors reasoned that this was essentially no different to finding individuals who list their name in public telephone directories or electoral rolls, since social media users are able to conceal or publicise their profiles. However, they noted that “there are legitimate concerns as to whether some (perhaps more vulnerable) individuals understand the full implications of making their personal details publicly visible” [ 47 , p. 35], potentially to a much larger audience than intended [ 44 , 47 ].

Three articles reported on participants’ experiences of being traced using social media. Two studies found participants were predominantly positive about the experience, although somewhat surprised about being re-contacted via social networking sites [ 44 , 56 ]. Participants perceived Facebook to be a “more secure and private way of being contacted than by telephone or letter” [ 44 , p. 32] and many were friendly and informal when contacted via Facebook. Conversely, one study found participants were cautious about engaging with researchers via social media as they were an older generation who lacked experience and confidence with that medium [ 47 ].

In general, using social media to trace participants was considered a valuable and worthwhile approach. However, authors were mindful that online tracing needs to be undertaken with care to ensure participant privacy and confidentiality. The majority of articles that used social media to trace participants ( n = 4/5) discussed the ethical challenges they encountered when using this method [ 44 – 47 ]. They also provided advice on how to minimise breaches in participant confidentiality and improve study legitimacy, including how to contact participants privately, prevent individuals or researchers inadvertently revealing their involvement in a study and to ensure that a traced participant is a correct match.

Of all reviewed articles, a number emphasised the responsibility of the researcher in protecting online data and participant anonymity, confidentiality and privacy, and how this should be a top priority [ 43 , 59 , 71 , 73 , 74 ]. Authors stressed that researchers must be aware of participants’ expectations about privacy and confidentiality online [ 74 ] and be mindful of participants’ awareness and knowledge (or lack of knowledge) of internet technologies and privacy settings [ 47 ]. One article suggested that researchers have an “ethical duty to call attention to this lack of privacy” and to inform participants if their privacy and anonymity cannot be guaranteed online [ 43 , p. 142]. Baker [ 43 ] used Facebook as a communication tool and source of data in ethnographic research with adolescents and required participants to add the researcher as a contact or ‘friend’. This presented an ethical challenge as all participants would be able to see one another on Facebook. To call attention to this, the consent form used Facebook terminology, explicitly stated that the anonymity and privacy of the participant could not be protected and instructed participants on how they could adjust their Facebook privacy settings to avoid inadvertent sharing of information.

Articles also highlighted that websites and platforms are rapidly changing as new features are developed [ 45 , 54 ]. This requires researchers to be familiar with privacy settings and to keep up to date with changes that could affect their participants [ 44 ]. For example, advertising on social networking sites as a recruitment strategy requires researchers to know and understand how advertising features operate and what personal information is collected from participants interested in participating. While Facebook does not reveal individual user information to the advertiser, researchers may want to consider minimising the amount of information exchanged within such sites and direct interested participants to a secure external website where they have greater control over privacy [ 20 , 54 , 73 ].

Informed consent.

A small number of articles discussed issues regarding informed consent when engaging participants online. Compared to some offline recruitment methods (such as recruiting participants face-to-face or by telephone), researchers have a “lack of immediate and real-time engagement with participants at the time of program enrolment online” [ 54 , p. 1084] which may limit their ability to assess participant comprehension and ensure participants are truly informed [ 54 , 64 ]. These concerns brought into question whether informed consent and implied consent can be trusted in online surveys. While one option is to ask participants to click a button at the beginning of an online survey to acknowledge their agreement and consent before being allowed to proceed, this method relies on participants having a sound understanding of the study and being competent to give informed consent [ 54 , 64 ]. Obtaining verbal consent may be one way to help ensure participants are exposed to consent information prior to enrolment in online research [ 54 , 59 ]. Telephone conversations allow researchers to use back-questioning techniques to help ensure participants have read and understood consent documents and the procedures, risks and benefits of a study.

As the ability to obtain face-to-face and verbal consent in internet research can be challenging, new and multiple strategies to ensure consent is informed are required. This may be particularly relevant if the research is anonymous or involves children and adolescents. One study reported how, during piloting of an online intervention, youth “didn’t express any concerns about why we were asking for sensitive information or what we would be doing with participant data” [ 54 , p. 1086]. The authors concluded that this indicated children and young people are generally not interested in reading formal informed consent materials or may not have the ability to understand these concepts. Alternative, tailored information available in a number of different formats (e.g., audio-clips, images, video or bullet-point summary) and readily accessible throughout the duration of the study (e.g., sent via email, attached to the survey) could be considered [ 54 , 63 , 71 ]. Researchers could also give participants the opportunity to discuss the study online via a study page [ 54 , 71 ]. However, one article did comment that providing extra measures and sources of information may not guarantee understanding, regardless of whether the research is conducted online or face-to-face [ 71 ]. Alternatively, researchers could employ a phased consent approach as reported by Sharkey et al. [ 71 ], where separate consent was taken from participants for study registration, participation and use of direct quotes, in order to increase participants’ understanding of the research and study protocol. The importance of maintaining consent when engaging research participants via social media was also discussed by Henderson et al. [ 72 ]. The authors noted how the dynamic nature of social media, including changes in the people involved in social networks over time, may alter the context of the initial consent. This raises questions regarding the ethical decision-making of researchers in social media-based research, and “whether there should be measures to check that consent continues to be given” [ 72 , p. 551].

Disparities in internet access and sample representativeness.

Some articles expressed concern over the ‘digital divide’, whereby internet-based recruitment strategies may limit the ability of researchers to reach groups disadvantaged by socioeconomic status or education, who lack internet access or digital literacy [ 36 , 54 , 59 , 74 ]. This may introduce bias and limit the representativeness of the study sample [ 60 , 75 ]. Conversely, some researchers argued that the digital divide was not a concern when recruiting young people online, given the high rates at which youth, including disadvantaged youth, use and access the internet [ 52 , 54 , 76 ].

Many articles commented on the representativeness of their online sample, with mixed findings. In some cases, samples recruited online were representative of the target population in terms of socioeconomic status and regional distribution [ 20 , 52 , 66 ] yet not regarding age or gender [ 20 , 66 , 77 ]. Online recruitment methods successfully engaged traditionally hard-to-reach populations such as regional, isolated or stigmatised groups [ 20 , 55 , 74 ] and allowed a broader sample to be recruited compared to offline methods of recruitment [ 55 , 78 ]. Others found online recruitment was associated with under-representation of some populations (e.g., minority groups, low socioeconomic status populations) and over-representation of others (e.g., tertiary educated) [ 20 , 49 , 66 , 79 ], although it was argued that similar sample biases are reported in offline recruitment methods [ 20 , 66 , 78 ]. One study reported similar demographic data for participants traced via Facebook and offline methods [ 46 ].

In most articles, sample representativeness was not addressed as an ethical concern but rather as a methodological limitation of the study design (e.g., [ 75 , 80 ]). However, two articles did highlight the need to justify using the internet to engage research participants [ 54 , 59 ]. They proposed that researchers should consider whether online methods are appropriate to engage and interact with research participants and which method (online or offline) will reach more of the target population. Care should also be taken to ensure that the chosen method of engagement is best for the participant, not the researcher, and to minimise the impact of disparities in internet access on participant inclusion or selection bias.

Incentives.

Three articles discussed the ethical concerns associated with offering incentives in research [ 44 , 62 , 81 ], yet only one focused on incentives in online research. Boydell et al. [ 62 ] aimed to recruit youth to online focus groups and was interested in offering an incentive. The authors were however concerned that requesting personal details from potential participants could compromise anonymity. As available literature provided no guidance on this issue, they opted not to offer an incentive, which they state, might have contributed to their poor online recruitment rates.

Risks to researchers.

Similar to participants, researchers may also be subject to privacy and safety risks when engaging participants online. While several articles reported interacting with participants online, for example via Facebook messaging features or discussion boards, only one study described the potential impact of this on the researcher and how they protected their personal privacy by creating a new Facebook account used solely for contacting participants [ 43 ]. Another study briefly acknowledged that sensitive research on adolescent self-harm may include risks for both participants and researchers, yet did not discuss this further [ 71 ].

What ethical guidelines are available and being used to inform internet research?

Guidance offered by academic articles..

The academic literature search identified a small number of articles offering ethical guidance when engaging research participants online. This is best illustrated in three case studies [ 54 , 59 , 71 ] where the authors list and present solutions to ethical issues encountered when recruiting young people on social networking sites and discussion forums. Other articles also provided ethical guidance by discussing the challenges encountered, the amendments made to study design and the strategies employed when using email in family research [ 74 ], recruiting participants into online focus groups [ 60 , 62 ] and tracing research participants online [ 44 , 47 ]. Several articles called for researchers to publish the methodological and ethical challenges they encounter when engaging research participants online and how these issues can be resolved [ 44 , 59 , 71 , 72 , 74 ], particularly when tracing participants [ 45 , 47 ] and engaging adolescents [ 73 ].

Guidelines and resources cited by academic articles.

Of the 58 research articles identified in the review, only three [ 35 , 37 , 82 ] described following internet-specific ethical guidelines when designing or undertaking their online research: these included professional guidelines produced by the Association of Internet Researchers (AoIR) [ 83 ] and the American Psychological Association (APA) [ 84 ], and practical guidance offered in academic literature [ 71 , 85 ]. Some articles [ 20 , 42 , 54 , 65 , 86 ] reported consulting ethical guidelines produced by their institutional review board [ 56 ], country of origin (e.g., National Statement on Ethical Conduct in Human Research [ 27 ], Belmont Report [ 87 ]) or the World Medical Association [ 88 ]. However, none of these provide specific ethical guidelines on the conduct of internet research. While the Belmont Report clearly precedes internet research, other more recent guidelines do not refer to the internet or online research. A small number of internet-specific ethical guidelines were recommended by articles [ 59 , 64 , 71 ], including professional guidelines published by the AoIR [ 83 , 89 ], APA [ 84 ] and the British Psychological Society (BPS) [ 90 , 91 ]. Other internet-specific ethics resources were also briefly mentioned [ 92 – 96 ].

Available guidelines.

A grey literature search identified a number of guidelines published from January 2006 to February 2016 specific to the ethical conduct of internet research. These included five professional guidelines developed by government bodies, societies and collaborative academic working groups (see Table 3 ) and ten university guidelines (see Table 4 ). Other resources included book chapters and websites.

https://doi.org/10.1371/journal.pone.0204572.t003

https://doi.org/10.1371/journal.pone.0204572.t004

Regarding professional guidelines, the most widely cited ethical guidelines for internet research are those published by the AoIR [ 83 ] and the BPS [ 90 , 97 ]. These offer broad advice to help researchers and research ethics committees make ethical decisions across all forms of internet research. They do not prescribe a code of practice or a ‘rule book’ but instead advocate for a flexible, case-based approach. Both recognise that the guidelines should not be considered as complete and that ethical decision-making will continue to evolve as new online tools are developed and new issues emerge. Produced in the USA, the AoIR guidelines briefly describe ongoing dilemmas in internet-based research before listing a set of guiding questions that should be considered when undertaking or reviewing online research methods. The document provides a basic overview of ethical considerations applicable to all types of internet research. While it does not specifically mention recruiting, retaining or tracing participants, it does raise key ethical concerns applicable to recruitment and outlines particular issues that may arise in online research with minors or vulnerable persons. Many of the ethical considerations listed in the AoIR guidelines are explored in more detail in the BPS guidelines, particularly regarding active recruitment of research participants. The BPS guidelines also provide recommendations and practical advice to guide ethical decision-making. These guidelines do not refer to child-specific ethical issues other than briefly stating that parental consent procedures will likely need to be obtained offline.

The grey literature search identified other professional guidelines not cited by articles identified in the review. Produced in Australia, Clark et al. [ 101 ] provide comprehensive advice for the use of digital data in research. Predominantly focusing on research using ‘big data’ rather than the direct involvement of participants, each issue is discussed in detail with examples and questions for consideration. The document also offers guidance to research ethics committees about ethical review processes. Produced in Norway, The National Committee for Research Ethics in the Social Sciences and the Humanities (NESH) guidelines [ 99 ] provide a brief discussion of ethical issues common to internet research. This does not give explicit guidance on how to overcome these issues but highlights how researchers must keep these issues in mind while continuing to follow general, fundamental ethical principles. The guidelines also include a section on protecting children in online research and emphasise the importance of obtaining parental consent and verifying age. Similar issues are raised in guidelines produced by the USA Secretary’s Advisory Committee on Human Research Protections (SACHRP) [ 98 ], where regulatory and ethical considerations pertaining to internet research are discussed, including online recruitment.

The grey literature search identified several universities, predominantly within the USA and UK, providing publicly accessible guidance on the ethical use of the internet in research. The content of the university guidelines varied widely and included comprehensive guidelines (e.g., [ 96 , 109 ]), general procedures and policies regarding recruitment, data collection and data storage (e.g., [ 104 ]) and resources that reiterate the AoIR guidelines (e.g., [ 102 ]). Guidelines developed by universities were often aimed at researchers and developed by ethics committees and review boards, to provide step-by-step procedural guidance to assist with ethical review processes. The search also identified one guideline produced by a university hospital [ 108 ] providing ethics-based recommendations and protocols for social media-based research, including online tracing. While some guidelines discussed ethical issues specific to online research with children, most did not. Two guidelines from universities in the USA reiterated the Children’s Online Privacy and Protection Act (COPPA), a federal law that requires verifiable parental consent if researchers collect personal information from children under 13 years of age.

Other resources describing the ethical issues of online research were also identified in the search. Several book chapters were identified [ 92 , 94 , 95 , 111 ]. These provide examples of online research methods and discuss common ethical issues, rather than offering procedural guidance. An online entry in the Stanford Encyclopaedia of Philosophy [ 112 ] provides a detailed discussion of key ethical issues in internet research including a verifying age and obtaining consent with minors. Several research ethics blogs and blog posts [ 113 – 115 ] and an online training program [ 93 ] were also found.

This review is the first attempt to identify and integrate literature on the ethics of using the internet to engage participants in family and child research. The review is timely in the context of changing communication patterns, increased social mobility and a research environment with limited funding. Communicating via the internet has rapidly emerged as the ‘new normal’ in everyday life; a development that has extended to the research world. Researchers (and, by extension, ethics committees) have a number of ethical concerns when engaging participants online. Some of these apply when engaging any research participant online, such as protecting participant privacy and confidentiality, obtaining consent and disparities in internet access. Engaging minors online raises additional ethical concerns and considerations, including parental consent, age verification and participant vulnerability. While these issues highlight some overlap between offline and online methods of participant engagement, the ‘visible’, far-reaching and dynamic nature of online platforms, especially social media, can inflate risk and introduce new challenges. Clearly, there are specific nuances of the online environment that the research community should be aware of. However, as highlighted in this review, many research articles do not report the ethical issues associated with engaging research participants online, and few refer to internet-specific ethical guidelines.

The review identified three unique ethical issues to be considered when engaging minors in research online. The first relates to the ethical and practical complexities of obtaining parental consent online. Parental consent serves to respect children’s developing autonomy and to provide for their protection [ 27 ], although in some cases may not be appropriate or protective. Inconsistent approaches and ambiguities in defining an adolescent, a mature minor and minimal risk research have led to extensive debate on the ethics and value of parental consent [ 116 – 118 ]. As recognised in this review, parental consent regulations differ by location, participant age, and research design and context, and are subject to case-by-case interpretation by ethics committees [ 119 , 120 ]. Academic researchers used a variety of methods to record parental consent. Limitations were reported for both offline and online procedures, and many authors noted a lack of guidance on ethical best practice. This was reflected in the grey literature search, which provided no formal guidance on how to document parental consent online. Instead, professional guidelines suggest researchers utilise offline consent procedures [ 90 , 99 ] while one university guideline recommends limiting online research with minors to minimal risk research that qualifies for a waiver of parental consent [ 103 ]. Guidelines on ethical best practice for obtaining parental consent online are clearly needed. In the interim, researchers and ethics committees may seek guidance from literature identified in this review [ 59 ] and elsewhere [ 4 , 121 ].

The second unique issue of verifying participant age was an important yet challenging aspect of engaging minors in research online as young people may misrepresent their age to participate. Articles suggested several strategies to verify age, including directly contacting the participant or their parent. However, depending on the nature and context of the study, this may be inappropriate or unfeasible. Others suggested validating participant age by reviewing social media profiles. This raises further concern for participant privacy and may not be a valid approach if the minor has falsified their age (e.g., Facebook users must be at least 13 years old to create an account). Articles did not explicitly discuss the ethical implications of inadvertently engaging younger or underage participants in research, despite the potential for them to be exposed to sensitive or age-inappropriate content. Guidance on this issue is mixed: one guideline [ 98 ] suggests researchers include fact-checking measures in online research instruments or employ age verification software; others suggest limiting online research with minors to minimal risk research [ 103 ] or to conduct the research offline [ 99 ].

The third issue identified in the review relates to children’s vulnerability in online research. Young people are often referred to as ‘digital natives’: a younger generation born into a ubiquitous digital environment who have used the internet, social media and mobile devices from an early age [ 122 ]. However, young people may also be digitally naïve [ 123 ], openly disclosing personal and potentially sensitive information without apparent concern for their privacy, without understanding or considering the permanence or far-reaching nature of online content, and without intending for their information to be used by others. Internet users are largely unaware of targeted advertising practices and the extent to which their online information and behaviours are collected and used by third parties [ 124 ], including researchers [ 125 ]. Privacy and data use policies are outlined in click-to-agree contracts and in website Terms of Service. Few users read or comprehend these often lengthy and indecipherable agreements and few understand how to protect their privacy online [ 126 ]. Discourse on how these issues apply in research is growing [ 127 ], yet literature exploring whether privacy risks are exacerbated for minors and vulnerable groups online is limited. Due to a lack of maturity, understanding, interest and/or digital literacy, it is possible that children and adolescents are less inclined than adults to read privacy and data use policies and understand how their online information is collected and used. Yet, this demographic group are prolific internet and social media users, and are increasingly encouraged to share their personal information [ 128 ]. This brings into question the appropriateness of researchers using this information to target individuals to participate in research, as is increasingly occurring.

Concerns were also raised about the possibility of participants, potentially those who are young or vulnerable, unwittingly ‘outing’ themselves as research participants online. This may occur due to a lack of knowledge regarding privacy settings, features and the reach of online platforms. While this may be no different to offline research where participants may disclose their participation to others, the audience is much more far-reaching in the online space and individuals may lose control of their information once they ‘release’ it online. These concerns require researchers to be transparent and openly inform prospective participants about potential risks to their privacy, confidentiality and anonymity online, as suggested by articles included in the review [ 43 ] and in recent literature [ 125 , 129 ].

An additional issue that received minimal attention in the review but which warrants further discourse is whether participants, particularly minors, are sufficiently informed in online research. One article noted that adolescents were generally uninterested in reading study information and informed consent materials [ 54 ]; an observation that has been reported by others engaging participants online and offline [ 130 , 131 ]. Children and adolescents may also misunderstand the information that is presented to them, which can be difficult for researchers to detect [ 132 ]. While researchers are advised to spend time with prospective participants and orally explain the research to them [ 133 , 134 ], this is often not possible or practical in online research. That young people are uninterested in consent materials or cannot understand them is ethically problematic in any research setting. These concerns may escalate in online research as parental consent is commonly waived, participants are separated physically and temporally from the researcher, and the immediacy of online platforms may prevent careful consideration of participation.

Despite recruiting participants online, many articles in this review obtained consent via traditional means (e.g., by post, face-to-face). The ongoing reliance on offline consent procedures may reflect concern for participant comprehension in online settings. However, the inability to assess whether participants are truly informed is not confined to online research (e.g., postal surveys), and articles often compared the deficiencies of online consent procedures against an idealised view of the communication than can, but often does not occur in face-to-face consent. Articles suggested several strategies to improve participant comprehension online, including video conferencing and phased consent. Some recognised the advantages of obtaining verbal consent and assessing comprehension via telephone, although we question the viability of this approach with large samples and its utility in anonymous research. Emerging evidence indicates that testing adolescents on their research rights and risks during the online consent process can improve study comprehension [ 135 ]. Further discourse on the effectiveness of alternative online approaches are warranted.

Our review has identified several insights and gaps in the academic literature that are worth noting. Firstly, while researchers have sought new ways to engage participants online, a continued reliance on traditional offline recruitment methods remains. The use of offline and online methods may help overcome technological barriers such as the digital divide but may also reflect uncertainty regarding the effectiveness of solely using the internet. Clear evidence for effectiveness is currently hampered by an absence of, or lack of detail in, reporting the success of recruitment, retention and tracing methods. Reporting ethics approval processes and how consent is obtained online could also be improved. The absence of this information does not ease concerns regarding the validity and credibility of online recruitment and online consent. We encourage researchers to report response metrics and/or recruitment source data as well as consent procedures. Researchers reporting results for internet surveys may wish to refer to Eysenbach’s checklist [ 136 ].

Over half of the articles included in the review did not discuss ethical issues beyond general ethical procedures. The limited discussion of ethical concerns aligns with that reported by Henderson et al. [ 72 ], who reviewed studies using social media to involve children or young people in research. They found articles were similarly silent on ethical issues. It is unclear why ethical issues are not acknowledged or at least not reported. It is possible that researchers view the ethical issues of engaging participants online as similar to offline methods. This has implications for research integrity and participant safety as some issues and risks posed online are different to traditional offline methods. Alternatively, researchers may not expect to comment on ethical issues if their study has received approval by a governing ethics committee, and publication word limits may preclude detailed description of ethical issues. Like Henderson et al. [ 72 ], we do not consider studies that are silent on ethical issues as unethical. Given the increasing use of online methods, the research community will greatly benefit from more detailed documentation of the ethical and methodological issues encountered or considered and the actions taken to address them.

We recognise that many of the ethical concerns identified in this review pertained to online recruitment. Using the internet to retain or trace participants was not as widely used or at least not commonly reported. This could be due to limitations in our search strategy, as articles may not explicitly refer to retention and tracing in their title, abstract or key words. Alternatively, it could reflect the smaller number of longitudinal studies (which require retention and tracing) relative to cross-sectional studies, or that use of the internet in this way is an emerging method not yet in widespread use. Nonetheless, it is surprising that so few retention and tracing studies were identified given the recognised difficulty in maintaining research cohorts in longitudinal research [ 137 , 138 ]. It is unclear whether the internet is not used for this purpose because researchers and/or ethics committees view it as problematic and unethical, or because they are unfamiliar with such methods. Most articles that reported online retention used email to maintain contact with participants, which was not considered to be ethically concerning. Other online retention strategies involving social media have been reported, such as researchers ‘friending’ participants on Facebook [ 139 , 140 ]. While these strategies can be effective at retaining adolescents in research, they raise ethical issues regarding participant confidentiality, the participant-researcher relationship, and potentially accessing information beyond what participants originally consent to. Most tracing studies identified in this review used social media to search for participants lost to follow-up, with many authors providing comment on the ethical and methodological considerations undertaken. Researchers interested in tracing participants via social media in the future will benefit from consulting these articles and other relevant literature [ 25 , 141 ]. Given its effectiveness, tracing participants via social media is likely to become more popular among researchers, but the lack of ethical guidance for this method is concerning.

Lastly, we show that most researchers do not refer to internet-specific ethical guidelines when reporting online recruitment, retention or tracing methods. Previous research has identified a perception from researchers and ethics committee members that there are few guidelines available to inform internet research [ 142 ]. Our review shows internet-specific ethical guidelines are available, yet researchers are largely unaware of them. Existing guidelines provide an overview of common ethical concerns, many of which are identified in this review, that are applicable when recruiting participants online. They do however vary in their content, scope and guidance, which may require researchers and ethics committee members to familiarise themselves with each resource and use the guidelines collectively when planning or reviewing online research. Most guidelines do not specifically comment on actively engaging research participants online, particularly for retaining or tracing participants via social media or for recruiting minors online.

Since conducting our literature searches in early 2016, additional internet-specific guidelines have emerged [ 143 – 147 ]. These guidelines generally focus on social media content as data rather than directly engaging participants online. Guidelines specifically addressing social media recruitment have also been developed [ 125 , 148 ], providing case studies and recommendations for both researchers and ethics committees. Given the dynamic and diverse nature of the internet, the majority of internet-specific ethical guidelines are purposefully broad, flexible and applicable to a range of online research methods. While there is a strong argument for guidelines to remain broad, a more structured procedural guideline that specifically and clearly outlines common methodological and ethical considerations when recruiting, retaining and tracing participants, including children, online will be well received.

Limitations

This review has several limitations. While we searched six academic databases and aimed to be inclusive with terminology, there may be relevant studies and articles that were not captured by the search strategy. For example, articles may describe ethical issues without referring to ‘ethics’ in their title, abstract or key words. Studies using online retention and tracing strategies may also not explicitly report this, as discussed, which may account for the few retention and tracing studies identified. While Facebook is a common research tool, the high proportion of studies using Facebook compared to other social media platforms may be due to this being the only platform specifically named in our search strategy. We recognise articles in other disciplines not included in this review would inform family and child research. We also recognise the limitations of the grey literature search, which was neither exhaustive nor systematic, with results limited to the first 100 hits. Google is not well suited for complex search queries and results are retrieved by popularity; therefore, relevant ethical guidelines may have been missed.

This scoping review provides a comprehensive overview of the ethical issues that arise when engaging participants in family and child research online and the available ethical guidance on online research. It serves as a useful resource for researchers and ethics committee members who are considering the ethical appropriateness of research in this context. All in all, using the internet and social media to recruit, retain and trace participants is possible, but must be harnessed appropriately. This requires researchers and ethics committees to be cognisant of a range of ethical issues, including the unique challenges associated with engaging minors online, and to carefully consider how these issues apply when planning, conducting and reviewing research.

Our review shows that researchers consider themselves primarily responsible for ensuring internet research is conducted ethically, yet it remains unclear to what extent researchers are aware of and appropriately informed of the specific ethical issues associated with engaging research participants online, particularly minors. Ethical guidelines are essential to consistent and high-quality decision-making, yet the lack of reported use of available guidelines and the scarcity of academic literature describing ethical concerns means research and ethical review are potentially occurring without suitable guidance. Increasing the research community’s understanding of the contextual and ethical challenges of engaging participants online is clearly required. This can be achieved by encouraging broad dissemination and use of current guidelines and resources (e.g., [ 83 , 97 , 125 ]) across research institutes and ethics committees. We also encourage researchers to provide more detail in academic articles when reporting on the internet as a research tool, including response metrics, ethical approval and consent procedures, and methodological and ethical considerations, particularly for research with children and adolescents. This review brings the ethical issues and guidelines presented in this review to the attention of the wider research community and promotes further discourse regarding the ethical conduct of recruiting, retaining and tracing participants online in family and child research.

Supporting information

S1 file. additional search limits applied to scopus database..

https://doi.org/10.1371/journal.pone.0204572.s001

S2 File. Academic articles data.

https://doi.org/10.1371/journal.pone.0204572.s002

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Internet Research Ethics

There is little research that is not impacted in some way on or through the Internet. The Internet, as a field, a tool, and a venue, has specific and far-reaching ethical issues. Internet research ethics is a subdiscipline that fits across many disciplines, ranging from social sciences, arts and humanities, medical/biomedical, and natural sciences. Extant ethical frameworks, including consequentialism , deontology , virtue ethics , and feminist ethics , have contributed to the ways in which ethical issues in Internet research are considered and evaluated.

Conceptually and historically, Internet research ethics is most related to computer and information ethics and includes such ethical issues as participant knowledge and consent, data privacy, security, anonymity and confidentiality, and integrity of data, intellectual property issues, and community, disciplinary, and professional standards or norms. Throughout the Internet’s evolution, there has been continued debate whether there are new ethical dilemmas emerging, or if the existing dilemmas are similar to dilemmas in other research realms (Elgesem 2002; Walther 2002; Ess & AoIR 2002; Marhkam & Buchanan 2012). These debates are similar to philosophical debates in computer and information ethics. For example, many years ago, James Moor (1985) asked “what is special about computers” in order to understand what, if anything, is unique ethically. Reminding us, however, that research itself must be guided by ethical principles, regardless of technological intervention, van Heerden et al. (2020) and Sloan et al. (2020) stress that the “fundamental principles of conducting ethical social research remain the same” (Ess & AoIR 2002; King 1996; Samuel and Buchanan, 2020).

Yet, as the Internet has evolved into a more social and communicative tool and venue, the ethical issues have shifted from purely data-driven to more human-centered. “On-ground” or face-to-face analogies, however, may not be applicable to online research. For example, the concept of the public park has been used as a site where researchers might observe others with little ethical controversy, but online, the concepts of public versus private are much more complex (SACHRP 2013). Thus, some scholars suggest that the specificity of Internet research ethics calls for new regulatory and/or professional and disciplinary guidance. For these reasons, the concept of human subjects research policies and regulation, informs this entry, which will continue discussions around ethical and methodological complexity, including personal identifiability, reputational risk and harm, notions of public space and public text, ownership, and longevity of data as they relate to Internet research. Specifically, the emergence of the social web raises issues around subject or participant recruitment practices, tiered informed consent models, and protection of various expectations and forms of privacy in an ever-increasing world of diffused and ubiquitous technologies. Additional ethical concerns center on issues of anonymity and confidentiality of data in spaces where researchers and their subjects may not fully understand the terms and conditions of those venues or tools, challenges to data integrity as research projects can be outsourced or crowdsourced to online labor marketplaces, and jurisdictional issues as more research is processed, stored, and disseminated via cloud computing or in remote server locales, presenting myriad legal complexities given jurisdictional differences in data laws. Further, the dominance of big data research has continued across research spaces, with the notions of “real-world data” and pervasive computing readily accepted and used in all disciplines. The ease of access and availability to use big data sets in myriad ways has enabled AI (artificial intelligence) and ML (machine learning) to grow as standard tools for researchers.

As a result, researchers using the Internet as a tool for and/or a space of research—and their research ethics boards (REBs), also known as institutional review boards (IRBs) in the United States or human research ethics committees (HRECs) in other countries such as Australia—have been confronted with a series of new ethical questions: What ethical obligations do researchers have to protect the privacy of subjects engaging in activities in “public” Internet spaces? What are such public spaces? Is there any reasonable expectation of privacy in an era of pervasive and ubiquitous surveillance and data tracking? How is confidentiality or anonymity assured online? How is and should informed consent be obtained online? How should research on minors be conducted, and how do you prove a subject is not a minor? Is deception (pretending to be someone you are not, withholding identifiable information, etc.) an acceptable online norm or a harm? How is “harm” possible to someone existing in an online space? How identifiable are individuals in large data sets? Do human subjects protections apply to big data? As more industry-sponsored research takes place, what ethical protections exist outside of current regulatory structures? As laws, such as the EU’s General Data Protection Regulation (GDPR 2016) are enacted, what are the global implications for data privacy and individual rights?

A growing number of scholars have explored these and related questions (see, for example, Bromseth 2002; Bruckman 2006; Buchanan 2004; Buchanan & Ess 2008; Johns, Chen & Hall 2003; Kitchin 2003, 2008; King 1996; Mann 2003; Markham & Baym 2008; McKee & Porter 2009; Thorseth 2003; Ess 2016; Zimmer & Kinder-Kurlanda (eds.) 2017; Samuel & Buchanan, 2020), scholarly associations have drafted ethical guidelines for Internet research (Ess & Association of Internet Researchers 2002; Markham, Buchanan, and AoIR 2012; franzke et al., 2020; Kraut et al. 2004), and non-profit scholarly and scientific agencies such as AAAS (Frankel & Siang 1999) are confronting the myriad of ethical concerns that Internet research poses to researchers and research ethics boards (REBs).

Given that over 50% of the world population uses the Internet, and that 97% of the world population now lives within reach of a mobile cellular signal and 93% within reach of a 3G (or higher) network (International Telecommunications Union, 2019), continued exploration of the ethical issues related to research in this heavily mediated environment is critical.

1. Definitions

2. human subjects research, 3. history and development of ire as a discipline, 4.1 privacy, 4.2 recruitment, 4.3.1 minors and consent, 4.4 cloud computing and research ethics, 4.5 big data considerations, 4.6 internet research and industry ethics, 5. research ethics boards guidelines, cited in entry, laws and government documents, professional standards, journals, forums, and blogs, other resources, related entries.

The commonly accepted definition of Internet research ethics (IRE) has been used by Buchanan and Ess (2008, 2009), Buchanan (2011), and Ess & Association of Internet Researchers (AoIR) (2002):

IRE is defined as the analysis of ethical issues and application of research ethics principles as they pertain to research conducted on and in the Internet. Internet-based research, broadly defined, is research which utilizes the Internet to collect information through an online tool, such as an online survey; studies about how people use the Internet, e.g., through collecting data and/or examining activities in or on any online environments; and/or, uses of online datasets, databases, or repositories.

These examples were broadened in 2013 by the United States Secretary’s Advisory Committee to the Office for Human Research Protections (SACHRP 2013), and included under the umbrella term Internet Research:

• Research studying information that is already available on or via the Internet without direct interaction with human subjects (harvesting, mining, profiling, scraping, observation or recording of otherwise-existing data sets, chat room interactions, blogs, social media postings, etc.)
• Research that uses the Internet as a vehicle for recruiting or interacting, directly or indirectly, with subjects (Self-testing websites, survey tools, Amazon Mechanical Turk, etc.)
• Research about the Internet itself and its effects (use patterns or effects of social media, search engines, email, etc.; evolution of privacy issues; information contagion; etc.)
• Research about Internet users: what they do, and how the Internet affects individuals and their behaviors Research that utilizes the Internet as an interventional tool, for example, interventions that influence subjects’ behavior
• Others (emerging and cross-platform types of research and methods, including m-research (mobile))
• Recruitment in or through Internet locales or tools, for example social media, push technologies

A critical distinction in the definition of Internet research ethics is that between the Internet as a research tool versus a research venue. The distinction between tool and venue plays out across disciplinary and methodological orientations. As a tool, Internet research is enabled by search engines, data aggregators, digital archives, application programming interfaces (APIs), online survey platforms, and crowdsourcing platforms. Internet-based research venues include such spaces as conversation applications (instant messaging and discussion forums, for example), online multiplayer games, blogs and interactive websites, and social networking platforms.

Another way of conceptualizing the distinction between tool and venue comes from Kitchin (2008), who has referred to a distinction in Internet research using the concepts of “engaged web-based research” versus “non-intrusive web-based research:”

Non-intrusive analyses refer to techniques of data collection that do not interrupt the naturally occurring state of the site or cybercommunity, or interfere with premanufactured text. Conversely, engaged analyses reach into the site or community and thus engage the participants of the web source (2008: 15).

These two constructs provide researchers with a way of recognizing when considering of human subject protections might need to occur. McKee and Porter (2009), as well as Banks and Eble (2007) provide guidance on the continuum of human-subjects research, noting a distinction between person-based versus text-based. For example, McKee and Porter provide a range of research variables (public/private, topic sensitivity, degree of interaction, and subject vulnerability) which are useful in determining where on the continuum of text-based versus how person-based the research is, and whether or not subjects would need to consent to the research (2009: 87–88).

While conceptually useful for determining human subjects participation, the distinction between tool and venue or engaged versus non-intrusive web-based research is increasingly blurring in the face of social media and their third-party applications. Buchanan (2016) has conceptualized three phases or stages of Internet research, and the emergence of social media characterize the second phase, circa 2006–2014. The concept of social media entails

A group of Internet-based applications that build on the ideological and technological foundations of Web 2.0, and that allow the creation and exchange of user-generated content (Kaplan & Haenlein 2010: 61).

A “social network site” is a category of websites with profiles, semi-persistent public commentary on the profile, and a traversable publicly articulated social network displayed in relation to the profile.

This collapse of tool and venue can be traced primarily to the increasing use of third-party sites and applications such as Facebook, Twitter, or any of the myriad online research tools where subject or participant recruitment, data collection, data analysis, and data dissemination can all occur in the same space. With these collapsing boundaries, the terms of “inter-jurisdictional coordination” (Gilbert 2009: 3) are inherently challenging; Gilbert has specifically argued against the terms of use or end-user license agreement stipulations in virtual worlds, noting that such agreements are often “flawed”, as they rely on laws and regulations from a specific locale and attempt to enforce them in a non place-based environment. Nonetheless, researchers now make frequent use of data aggregation tools, scraping data from user profiles or transaction logs, harvesting data from Twitter streams, or storing data on cloud servers such as Dropbox only after agreeing to the terms of service that go along with those sites. The use of such third party applications or tools changes fundamental aspects of research, oftentimes displacing the researcher or research team as the sole owner of their data. These unique characteristics implicate concepts and practicalities of privacy, consent, ownership, and jurisdictional boundaries.

A key moment that typified and called attention to many of these concerns emerged with the 2014 Facebook Emotional Contagion study (Booth, 2014). By virtue of agreeing to Facebook’s Terms of Service, did users consent to participation in research activities? Should there have been a debriefing after the experiment? How thoroughly did a university research ethics board review the study? Should industry-sponsored research undergo internal ethics review? In response to the outcry of the Contagion study, Ok Cupid’s Christian Rudder (2014 [ OIR ]) defended these sorts of experiments, noting

We noticed recently that people didn’t like it when Facebook “experimented” with their news feed. Even the FTC is getting involved. But guess what, everybody: if you use the Internet, you’re the subject of hundreds of experiments at any given time, on every site. That’s how websites work.

The phenomenon of the social web forces an ongoing negotiation between researchers and their data sources, as seen in the Facebook contagion study and the subsequent reaction to it. Moreover, with the growing use and concentration of mobile devices, the notion of Internet research is expanding with a movement away from a “place-based” Internet to a dispersed reality. Data collection from mobile devices has increased exponentially. For example, mobile devices enable the use of synchronous data collection and dissemination from non-place based environments. Researchers using cloud-enabled applications can send and receive data to and from participants synchronously. The impact of such research possibilities for epidemiological research is staggering for its scientific potential while demanding for the concurrent ethical challenges, as we are seeing with mobile-based COVID-19 research (Drew et al., 2020) and the sampling of subjects' current behaviors and experiences in real-time (Hubach et al., forthcoming). As Internet research has grown from a niche methodology into a nearly ubiquitous and often invisible practice, the traditional concepts of human subjects research require careful consideration.

The practical, professional, and theoretical implications of human subjects protections has been covered extensively in scholarly literature, ranging from medical/biomedical to social sciences to computing and technical disciplines (see Beauchamp & Childress 2008; Emanual et al. 2003; PRIM&R et al. 2021; Sieber 1992; Wright 2006). Relevant protections and regulations continue to receive much attention in the face of research ethics violations (see, for example, Skloot 2010, on Henrietta Lacks; the U.S. Government’s admission and apology to the Guatemalan Government for STD testing in the 1940s (BBC 2011); and Gaw & Burns 2011, on how lessons from the past might inform current research ethics and conduct).

The history of human subjects protections (Sparks 2002 [see Other Internet Resources aka OIR ]) grew out of atrocities such as Nazi human experimentation during World War II, which resulted in the Nuremberg Code (1947); subsequently followed by the Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects (World Medical Association 1964/2008). Partially in response to the Tuskegee syphilis experiment, an infamous clinical study conducted between 1932 and 1972 by the U.S. Public Health Service studying the natural progression of untreated syphilis in rural African-American men in Alabama under the guise of receiving free health care from the government, the U.S. Department of Health and Human Services put forth a set of basic regulations governing the protection of human subjects (45 C.F.R. § 46) (see the links in the Other Internet Resources section, under Laws and Government Documents). This was later followed by the publication of the “Ethical Principles and Guidelines for the Protection of Human Subjects of Research” by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, known as the Belmont Report (NCPHSBBR 1979). The Belmont Report identifies three fundamental ethical principles for all human subjects research: Respect for Persons, Beneficence, and Justice.

To ensure consistency across federal agencies in the United States context in human subjects protections, in 1991, the Federal Policy for the Protection of Human Subjects, also known as the “Common Rule” was codified; the Revised Common Rule was released in the Federal Register on 19 January 2017, and went into effect 19 July 2018. Similar regulatory frameworks for the protection of human subjects exist across the world, and include, for example, the Canadian Tri-Council, the Australian Research Council, The European Commission, The Research Council of Norway and its National Committee for Research Ethics in the Social Sciences and Humanities (NESH 2006; NESH 2019), and the U.K.’s NHS National Research Ethics Service and the Research Ethics Framework (REF) of the ESRC (Economic and Social Research Council) General Guidelines, and the Forum for Ethical Review Committees in Asia and the Western Pacific (FERCAP).

In the United States, the various regulatory agencies who have signed on to the Common Rule (45 C.F.R. 46 Subpart A) have not issued formal guidance on Internet research (see the links in the Other Internet Resources section, under Laws and Government Documents). The Preamble to the Revised Rule referenced significant changes in the research environment, recognizing a need to broaden the scope of the Rule. However, substantial changes to the actual Rule in regards to Internet research in its broadest context, were minimal.

For example, the Preamble states:

This final rule recognizes that in the past two decades a paradigm shift has occurred in how research is conducted. Evolving technologies—including imaging, mobile technologies, and the growth in computing power—have changed the scale and nature of information collected in many disciplines. Computer scientists, engineers, and social scientists are developing techniques to integrate different types of data so they can be combined, mined, analyzed, and shared. The advent of sophisticated computer software programs, the Internet, and mobile technology has created new areas of research activity, particularly within the social and behavioral sciences (Federal Register 2017 and HHS 2017).

Modest changes to the definition of human subjects included changing “data” to “information” and “biospecimens;” the definition now reads:

(e) (1) Human subject means a living individual about whom an investigator (whether professional or student) conducting research: (i) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; or (ii) Obtains, uses, studies, analyzes, or generates identifiable private information or identifiable biospecimens. (2) Intervention includes both physical procedures by which information or biospecimens are gathered (e.g., venipuncture) and manipulations of the subject or the subject's environment that are performed for research purposes. (3) Interaction includes communication or interpersonal contact between investigator and subject. (4) Private information includes information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information that has been provided for specific purposes by an individual and that the individual can reasonably expect will not be made public (e.g., a medical record). (5) Identifiable private information is private information for which the identity of the subject is or may readily be ascertained by the investigator or associated with the information. (6) An identifiable biospecimen is a biospecimen for which the identity of the subject is or may readily be ascertained by the investigator or associated with the biospecimen (45 C.F.R. § 46.102 (2018)).

However, the Revised Rule does have a provision that stands to be of import in regards to Internet research; the Rule calls for implementing departments or agencies to,

[(e)(7)] (i) Upon consultation with appropriate experts (including experts in data matching and re-identification), reexamine the meaning of “identifiable private information”, as defined in paragraph (e)(5) of this section, and “identifiable biospecimen”, as defined in paragraph (e)(6) of this section. This reexamination shall take place within 1 year and regularly thereafter (at least every 4 years). This process will be conducted by collaboration among the Federal departments and agencies implementing this policy. If appropriate and permitted by law, such Federal departments and agencies may alter the interpretation of these terms, including through the use of guidance. (ii) Upon consultation with appropriate experts, assess whether there are analytic technologies or techniques that should be considered by investigators to generate “identifiable private information”, as defined in paragraph (e)(5) of this section, or an “identifiable biospecimen”, as defined in paragraph (e)(6) of this section. This assessment shall take place within 1 year and regularly thereafter (at least every 4 years). This process will be conducted by collaboration among the Federal departments and agencies implementing this policy. Any such technologies or techniques will be included on a list of technologies or techniques that produce identifiable private information or identifiable biospecimens. This list will be published in the Federal Register after notice and an opportunity for public comment. The Secretary, HHS, shall maintain the list on a publicly accessible Web site (45 C.F.R. § 46.102 (2018)).

As of this writing, there has not yet been a reexamination of the concepts of “identifiable private information” or “identifiable biospecimens”. However, as data analytics, AI, and machine learning continue to expose ethical issues in human subjects research, we expect to see engaged discussion at the federal level and amongst research communities (PRIM&R 2021). Those discussions may refer to previous conceptual work by Carpenter and Dittrich (2012) and Aycock et al. (2012) that is concerned with risk and identifiability. Secondary uses of identifiable, private data, for example, may pose downstream harms, or unintentional risks, causing reputational or informational harms. Reexaminations of “identifiable private information” can not occur without serious consideration of risk and “human harming research”. Carpenter and Dittrich (2012) encourage

“Review boards should transition from an informed consent driven review to a risk analysis review that addresses potential harms stemming from research in which a researcher does not directly interact with the at-risk individuals” (p. 4) as “[T]his distance between researcher and affected individual indicates that a paradigm shift is necessary in the research arena. We must transition our idea of research protection from ‘human subjects research’ to ‘human harming research’” (p. 14). [ 1 ]

Similarly, Aycock et al. (2012) assert that

Researchers and boards must balance presenting risks related to the specific research with risks related to the technologies in use. With computer security research, major issues around risk arise, for society at large especially. The risk may not seem evident to an individual but in the scope of security research, larger populations may be vulnerable. There is a significant difficulty in quantifying risks and benefits, in the traditional sense of research ethics….An aggregation of surfing behaviors collected by a bot presents greater distance between researcher and respondent than an interview done in a virtual world between avatars. This distance leads us to suggest that computer security research focus less concern around human subjects research in the traditional sense and more concern with human harming research (p. 3, italics original).

These two conceptual notions are relevant for considering emergent forms of identities or personally identifiable information (PII) such as avatars, virtual beings, bots, textual and graphical information. Within the Code of Federal Regulations (45 C.F.R. § 46.102(f) 2009): New forms of representations are considered human subjects if PII about living individuals is obtained. PII can be obtained by researchers through scraping data sources, profiles or avatars, or other pieces of data made available by the platform. Fairfield agrees: “An avatar, for example, does not merely represent a collection of pixels—it represents the identity of the user” (2012: 701).

The multiple academic disciplines already long engaged in human subjects research (medicine, sociology, anthropology, psychology, communication) have established ethical guidelines intended to assist researchers and those charged with ensuring that research on human subjects follows both legal requirements and ethical practices. But with research involving the Internet—where individuals increasingly share personal information on platforms with porous and shifting boundaries, where both the spread and aggregation of data from disparate sources has become the norm, and where web-based services, and their privacy policies and terms of service statements, morph and evolve rapidly—the ethical frameworks and assumptions traditionally used by researchers and REBs are frequently challenged.

Research ethics boards themselves are increasingly challenged with the unique ethical dimensions of internet-based research protocols. In a 2008 survey of U.S. IRBs, less than half of the ethical review boards identified internet-based research was “an area of concern or importance” at that time, and only 6% had guidelines or checklists in place for reviewing internet-based research protocols (Buchanan & Ess 2009). By 2015, 93% of IRBs surveyed acknowledged that are ethical issues unique to research using “online data”, yet only 55% said they felt their IRBs are well versed in the technical aspects of online data collection, and only 57% agreed that their IRB has the expertise to stay abreast of changes in online technology. IRBs are now further challenged with the growth of big data research (see §4.5 below ), which increasingly relies on large datasets of personal information generated via social media, digital devices, or other means often hidden from users. A 2019 study of IRBs revealed only 25% felt prepared to evaluate protocols relying on big data, and only 6% had tools sufficient for considering this emerging area of internet research (Zimmer & Chapman 2020). Further, after being presented various hypothetical research scenarios utilizing big data and asked how their IRB would likely review such a protocol, numerous viewpoints different strongly in many cases. Consider the following scenario:

Researchers plan to scrape public comments from online newspaper pages to predict election outcomes. They will aggregate their analysis to determine public sentiment. The researchers don’t plan to inform commenters, and they plan to collect potentially-identifiable user names. Scraping comments violates the newspaper’s terms of service.

18% of respondents indicated their IRB would view this as exempt, 21% indicated expedited review, 33% suggested it would need full board review, while 28% did not think this was even human subjects research that would fall under their IRB’s purview (Zimmer & Chapman 2020). This points to potential gaps and inconsistencies in how IRBs review the ethical implications of big data research protocols.

An extensive body of literature has developed since the 1990s around the use of the Internet for research (S. Jones 1999; Hunsinger, Klastrup, & Allen (eds.) 2010; Consalvo & Ess (eds.) 2011; Zimmer & Kinder-Kurlanda (eds.) 2017), with a growing emphasis on the ethical dimensions of Internet research.

A flurry of Internet research, and explicit concern for the ethical issues concurrently at play in it, began in the mid-1990s. In 1996, Storm King recognized the growing use of the Internet as a venue for research. His work explored the American Psychological Association’s guidelines for human subjects research with emergent forms of email, chat, listservs, and virtual communities. With careful attention to risk and benefit to Internet subjects, King offered a cautionary note:

When a field of study is new, the fine points of ethical considerations involved are undefined. As the field matures and results are compiled, researchers often review earlier studies and become concerned because of the apparent disregard for the human subjects involved (1996: 119).

The 1996 issue of Information Society dedicated to Internet research is considered a watershed moment, and included much seminal research still of impact and relevance today (Allen 1996; Boehlefeld 1996; Reid 1996).

Sherry Turkle’s 1997 Life on the Screen: Identity in the Age of the Internet called direct attention to the human element of online game environments. Moving squarely towards person-based versus text-based research, Turkle pushed researchers to consider human subjects implications of Internet research. Similarly, Markham’s Life Online: Researching Real Experience in Virtual Space (1998) highlighted the methodological complexities of online ethnographic studies, as did Jacobson’s 1999 methodological treatment of Internet research. The “field” of study changed the dynamics of researcher-researched roles, identity, and representation of participants from virtual spaces. Markham’s work in qualitative online research has been influential across disciplines, as research in nursing, psychology, and medicine has found the potential of this paradigm for online research (Flicker et al. 2004; Eysenbach & Till 2001; Seaboldt & Kupier 1997; Sharf 1997).

Then, in 1999, the American Association for the Advancement of Science (AAAS), with a contract from the U.S. Office for Protection from Research Risks (now known as the Office for Human Research Protections), convened a workshop, with the goal of assessing the alignment of traditional research ethics concepts to Internet research. The workshop acknowledged

The vast amount of social and behavioral information potentially available on the Internet has made it a prime target for researchers wishing to study the dynamics of human interactions and their consequences in this virtual medium. Researchers can potentially collect data from widely dispersed population sat relatively low cost and in less time than similar efforts in the physical world. As a result, there has been an increase in the number of Internet studies, ranging from surveys to naturalistic observation (Frankel & Siang 1999: 1).

In the medical/biomedical contexts, Internet research has grown rapidly. Also in 1999, Gunther Eysenbach wrote the first editorial to the newly formed Journal of Medical Internet Research . There were three driving forces behind the inception of this journal, and Eysenbach called attention to the growing social and interpersonal aspects of the Internet:

First, Internet protocols are used for clinical information and communication. In the future, Internet technology will be the platform for many telemedical applications. Second, the Internet revolutionizes the gathering, access and dissemination of non-clinical information in medicine: Bibliographic and factual databases are now world-wide accessible via graphical user interfaces, epidemiological and public health information can be gathered using the Internet, and increasingly the Internet is used for interactive medical education applications. Third, the Internet plays an important role for consumer health education, health promotion and teleprevention. (As an aside, it should be emphasized that “health education” on the Internet goes beyond the traditional model of health education, where a medical professional teaches the patient: On the Internet, much “health education” is done “consumer-to-consumer” by means of patient self support groups organizing in cyberspace. These patient-to-patient interchanges are becoming an important part of healthcare and are redefining the traditional model of preventive medicine and health promotion).

With scholarly attention growing and with the 1999 AAAS report (Frankel & Siang 1999) calling for action, other professional associations took notice and began drafting statements or guidelines, or addendum to their extant professional standards. For example, The Board of Scientific Affairs (BSA) of the American Psychological Association established an Advisory Group on Conducting Research on the Internet in 2001; the American Counseling Association’s 2005 revision to its Code of Ethics; the Association of Internet Researchers (AoIR) Ethics Working Group Guidelines, the National Committee for Research Ethics in the Social Sciences and the Humanities (NESH Norway), among others, have directed researchers and review boards to the ethics of Internet research, with attention to the most common areas of ethical concern (see OIR for links).

While many researchers focus on traditional research ethics principles, conceptualizations of Internet research ethics depend on disciplinary perspectives. Some disciplines, notably from the arts and humanities, posit that Internet research is more about context and representation than about “human subjects”, suggesting there is no intent, and thus minimal or no harm, to engage in research about actual persons. The debate has continued since the early 2000s. White (2002) argued against extant regulations that favored or privileged specific ideological, disciplinary and cultural prerogatives, which limit the freedoms and creativity of arts and humanities research. For example, she notes that the AAAS report “confuses physical individuals with constructed materials and human subjects with composite cultural works”, again calling attention to the person versus text divide that has permeated Internet research ethics debates. Another example of disciplinary differences comes from the Oral History Association, which acknowledged the growing use of the Internet as a site for research:

Simply put, oral history collects memories and personal commentaries of historical significance through recorded interviews. An oral history interview generally consists of a well-prepared interviewer questioning an interviewee and recording their exchange in audio or video format. Recordings of the interview are transcribed, summarized, or indexed and then placed in a library or archives. These interviews may be used for research or excerpted in a publication, radio or video documentary, museum exhibition, dramatization or other form of public presentation. Recordings, transcripts, catalogs, photographs and related documentary materials can also be posted on the Internet (Ritchie 2003: 19).

While the American Historical Association (A. Jones 2008) has argued that such research be “explicitly exempted” from ethical review board oversight, the use of the Internet could complicate such a stance if such data became available in public settings or available “downstream” with potential, unforeseeable risks to reputation, economic standing, or psychological harm, should identification occur.

Under the concept of text rather than human subjects, Internet research rests on arguments of publication and copyright; consider the venue of a blog, which does not meet the definition of human subject as in 45 C.F.R. § 46.102f (2009), as interpreted by most ethical review boards. A researcher need not obtain consent to use text from a blog, as it is generally considered publicly available, textual, published material. This argument of the “public park” analogy that has been generally accepted by researchers is appropriate for some Internet venues and tools, but not all: Context, intent, sensitivity of data, and expectations of Internet participants were identified in 2004 by Sveninngsson as crucial markers in Internet research ethics considerations.

By the mid-2000s, with three major anthologies published, and a growing literature base, there was ample scholarly literature documenting IRE across disciplines and methodologies, and subsequently, there was anecdotal data emerging from the review boards evaluating such research. In search of empirical data regarding the actual review board processes of Internet research from a human subjects perspective, Buchanan and Ess surveyed over 700 United States ethics review boards, and found that boards were primarily concerned with privacy, data security and confidentiality, and ensuring appropriate informed consent and recruitment procedures (Buchanan & Ess 2009; Buchanan & Hvizdak 2009).

In 2008, the Canadian Tri-Council’s Social Sciences and Humanities Research Ethics Special Working Committee: A Working Committee of the Interagency Advisory Panel on Research Ethics was convened (Blackstone et al. 2008); and in 2010, a meeting at the Secretary’s Advisory Committee to the Office for Human Research Protections highlighted Internet research (SACHRP 2010). Such prominent professional organizations as the Public Responsibility in Medicine and Research (PRIM&R) and the American Educational Research Association (AERA) have begun featuring Internet research ethics regularly at their conferences and related publications.

Recently, disciplines not traditionally involved in human subjects research have begun their own explorations of IRE. For example, researchers in computer security have actively examined the tenets of research ethics in CS and ICT (Aycock et al. 2012; Dittrich, Bailey, & Dietrich 2011; Carpenter & Dittrich 2012; Buchanan et al. 2011). Notably, the U.S. Federal Register requested comments on “The Menlo Report” in December 2011, which calls for a commitment by computer science researchers to the three principles of respect for persons, beneficence, and justice, while also adding a fourth principle on respect for law and public interest (Homeland Security 2011). SIGCHI, an international society for professionals, academics, and students interested in human-technology and human-computer interaction (HCI), has increasingly focused on how IRE applies to work in their domain (Frauenberger et al. 2017; Fiesler et al. 2018).

4. Key Ethical Issues in Internet Research

Principles of research ethics dictate that researchers must ensure there are adequate provisions to protect the privacy of subjects and to maintain the confidentiality of any data collected. A violation of privacy or breach of confidentiality presents a risk of serious harm to participants, ranging from the exposure of personal or sensitive information, the divulgence of embarrassing or illegal conduct, or the release of data otherwise protected under law.

Research ethics concerns around individual privacy is often expressed in terms of the level of linkability of data to individuals, and the potential harms from disclosure of information As Internet research has grown in complexity and computational sophistication, ethics concerns have focused on current and future uses of data, and the potential downstream harms that could occur. Protecting research participants’ privacy and confidentiality is typically achieved through a combination of research tactics and practices, including engaging in data collection under controlled or anonymous environments, the scrubbing of data to remove personally identifiable information (PII), or the use of access restrictions and related data security methods. And, the specificity and characteristics of the data will often dictate if there are regulatory considerations, in addition to the methodological considerations around privacy and confidentiality. For example, personally identifiable information (PII) typically demands the most stringent protections. The National Institutes of Health (NIH), for example, defines PII as:

any information about an individual maintained by an agency, including, but not limited to, education, financial transactions, medical history, and criminal or employment history and information which can be used to distinguish or trace an individual’s identity, such as their name, SSN, date and place of birth, mother’s maiden name, biometric records, etc., including any other personal information that is linked or linkable to an individual (NIH 2010).

Typically, examples of identifying pieces of information have included personal characteristics (such as date of birth, place of birth, mother’s maiden name, gender, sexual orientation, and other distinguishing features and biometrics information, such as height, weight, physical appearance, fingerprints, DNA and retinal scans), unique numbers or identifiers assigned to an individual (such as a name, address, phone number, social security number, driver’s license number, financial account numbers), and descriptions of physical location (GIS/GPS log data, electronic bracelet monitoring information).

The 2018 EU General Data Protection Regulation lays out the legal and regulatory requirements for data use across the EU. Mondschein & Monda (2018) provides a thorough discussion on the different types of data that are considered in the GDPR: Personal data, such as names, identification numbers, location data, and so on; Special categories of personal data, such as race or ethic origin, political opinions, or religious beliefs; Pseudonymous data, referring to data that has been altered so the subject cannot be directly identified without having further information; Anonymous data, information which does not relate to an identifiable natural person or to personal data rendered anonymous in such a manner that the data subject is not or no longer identifiable. They also advise researchers to consider

data protection issues at an early stage of a research project is of great importance specifically in the context of large-scale research endeavours that make use of personal data (2018: 56).

Internet research introduces new complications to these longstanding definitions and regulatory frameworks intended to protect subject privacy. For example, researchers increasingly are able to collect detailed data about individuals from sources such as Facebook, Twitter, blogs or public email archives, and these rich data sets can more easily be processed, compared, and combined with other data (and datasets) available online. In numerous cases, both researchers and members of the general public have been able to re-identify individuals by analyzing and comparing such datasets, using data-fields as benign as one’s zip code (Sweeny 2002), random Web search queries (Barbaro & Zeller 2006), or movie ratings (Narayanan & Shmatikov 2008) as the vital key for reidentification of a presumed anonymous user. Prior to widespread Internet-based data collection and processing, few would have considered one’s movie ratings or zipcode as personally-identifiable. Yet, these cases reveal that merely stripping traditional “identifiable” information such as a subject’s name, address, or social security number is no longer sufficient to ensure data remains anonymous (Ohm 2010), and requires the reconsideration of what is considered “personally identifiable information” (Schwartz & Solove 2011). This points to the critical distinction between data that is kept confidential versus data that is truly anonymous. Increasingly, data are rarely completely anonymous, as researchers have routinely demonstrated they can often reidentify individuals hidden in “anonymized” datasets with ease (Ohm 2010). This reality places new pressure on ensuring datasets are kept, at the least, suitably confidential through both physical and computational security measures. These measures may also include requirements to store data in “clean rooms”, or in non-networked environments in an effort to control data transmission.

Similarly, new types of data often collected in Internet research might also be used to identify a subject within a previously-assumed anonymous dataset. For example, Internet researchers might collect Internet Protocol (IP) addresses when conducting online surveys or analyzing transaction logs. An IP address is a unique identifier that is assigned to every device connected to the Internet; in most cases, individual computers are assigned a unique IP address, while in some cases the address is assigned to a larger node or Internet gateway for a collection of computers. Nearly all websites and Internet service providers store activity logs that link activity with IP addresses, in many cases, eventually to specific computers or users. Current U.S. law does not hold IP addresses to be personally identifiable information, while other countries and regulatory bodies do. For example, the European Data Privacy Act at Article 29, holds that IP addresses do constitute PII. Buchanan et al. (2011), note, however, that under the U.S. Civil Rights Act, for the purposes of the HIPAA Act, [ 2 ] IP addresses are considered a form of PII (45 C.F.R. § 164.514 2002). [ 3 ] There could potentially be a reconsideration by other federal regulatory agencies over IP addresses as PII, and researchers and boards will need to be attentive should such change occur.

A similar complication emerges when we consider the meaning of “private information” within the context of Internet-based research. U.S. federal regulations define “private information” as:

[A]ny information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information that has been provided for specific purposes by an individual and that the individual can reasonably expect will not be made public (for example, a medical record) (45 C.F.R. § 46.102(f) 2009).

This standard definition of “private information” has two key components. First, private information is that which subjects reasonably expect is not normally monitored or collected. Second, private information is that which subjects reasonably expect is not typically publicly available. Conversely, the definition also suggests the opposite is true: if users cannot reasonably expect data isn’t being observed or recorded, or they cannot expect data isn’t publicly available, then the data does not rise to the level of “private information” requiring particular privacy protections. Researchers and REBs have routinely worked with this definition of “private information” to ensure the protection of individuals’ privacy.

These distinctions take on greater weight, however, when considering the data environments and collection practices common with Internet-based research. Researchers interested in collecting or analyzing online actions of subjects—perhaps through the mining of online server logs, the use of tracking cookies, or the scraping of social media profiles and feeds—could argue that subjects do not have a reasonable expectation that such online activities are not routinely monitored since nearly all online transactions and interactions are routinely logged by websites and service providers. Thus, online data trails might not rise to the level of “private information”. However, numerous studies have indicated that average Internet users have incomplete understandings of how their activities are routinely tracked, and the related privacy practices and policies of the sites they visit (Hoofnagle & King 2008 [ OIR ]; Milne & Culnan 2004; Tsai et al. 2006). Hudson and Bruckman (2005) conducted empirical research on users’ expectations and understandings of privacy, finding that participants’ expectations of privacy within public chatrooms conflicted with what was actually a very public online space. Rosenberg (2010) examined the public/private distinction in the realm of virtual worlds, suggesting researchers must determine what kind of social norms and relations predominate an online space before making assumptions about the “publicness” of information shared within. Thus, it remains unclear whether Internet users truly understand if and when their online activity is regularly monitored and tracked, and what kind of reasonable expectations truly exist. This ambiguity creates new challenges for researchers and REBs when trying to apply the definition of “private information” to ensure subject privacy is properly addressed (Zimmer 2010).

This complexity in addressing subject privacy in Internet research is further compounded with the rise of social networking as a place for the sharing of information, and a site for research. Users increasingly share more and more personal information on platforms like Facebook or Twitter. For researchers, social media platforms provide a rich resource for study, and much of the content is available to be viewed and downloaded with minimal effort. Since much of the information posted to social media sites is publicly viewable, it thus fails to meet the standard regulatory definition of “private information”. Therefore, researchers attempting to collect and analyze social media postings might not treat the data as requiring any particular privacy considerations. Yet, social media platforms represent a complex environment of social interaction where users are often required to place friends, lovers, colleagues, and minor acquaintances within the same singular category of “friends”, where privacy policies and terms of service are not fully understood (Madejski et al. 2011), and where the technical infrastructures fail to truly support privacy projections (Bonneau & Preibush 2010) and regularly change with little notice (Stone 2009 [ OIR ]; Zimmer 2009 [ OIR ]). As a result, it is difficult to understand with any certainty what a user’s intention was when posting an item onto a social media platform (Acquisti & Gross 2006). The user may have intended the post for a private group but failed to completely understand how to adjust the privacy settings accordingly. Or, the information might have previously been restricted to only certain friends, but a change in the technical platform suddenly made the data more visible to all.

Ohm (2010) warns that

the utility and privacy of data are linked, and so long as data is useful, even in the slightest, then it is also potentially reidentifiable (2010: 1751).

With the rapid growth of Internet-based research, Ohm’s concern becomes even more dire. The traditional definitions and approaches to understanding the nature of privacy, anonymity, and precisely what kind of information deserves protection becomes strained, forcing researchers and REBs to consider more nuanced theories of privacy (Nissenbaum 2009) and approaches to respecting and projecting subject privacy (Markham 2012; Zimmer 2010).

Depending on the type of Internet research being carried out, recruitment of participants may be done in a number of ways. As with any form of research, the study population or participants are selected for specific purposes (i.e., an ethnographic study of a particular group on online game players), or, can be selected from a range of sampling techniques (i.e., a convenience sample gleaned from the users of Amazon’s Mechanical Turk crowdsourcing platform [ 4 ] ). In the U.S. context, a recruitment plan is considered part of the informed consent process, and as such, any recruitment script or posting must be reviewed and approved by an REB prior to posting or beginning solicitation (if the project is human subjects research). Further, the selection of participants must be impartial and unbiased, and any risks and benefits must be justly distributed. This concept is challenging to apply in Internet contexts, in which populations are often self-selected and can be exclusive, depending on membership and access status, as well as the common disparities of online access based on economic and social variables. Researchers also face recruitment challenges due to online subjects’ potential anonymity, especially as it relates to the frequent use of pseudonyms online, having multiple or alternative identities online, and the general challenges of verifying a subject’s age and demographic information. Moreover, basic ethical principles for approaching and recruiting participants involve protecting their privacy and confidentiality. Internet research can both maximize these protections, as an individual may never be known beyond a screen name or avatar existence; or, conversely, the use of IP addresses, placement of cookies, availability and access to more information than necessary for the research purposes, may minimize the protections of privacy and confidentiality.

Much recruitment is taking place via social media; examples include push technologies, a synchronous approach in which a text or tweet is sent from a researcher to potential participants based on profile data, platform activity, or geolocation. Other methods of pull technologies recruitment include direct email, dedicated web pages, YouTube videos, direct solicitation via “stickies” posted on fora or web sites directing participants to a study site, or data aggregation or scraping data for potential recruitment. Regardless of the means used, researchers must follow the terms of the site—from the specific norms and nuances governing a site or locale to the legal issues in terms of service agreements. For example, early pro-anorexia web sites (see Overbeke 2008) were often treated as sensitive spaces deserving spcicial consideration, and researchers were asked to respect the privacy of the participants and not engage in research (Walstrom 2004). In the gaming context, Reynolds and de Zwart (2010) ask:

Has the researcher disclosed the fact that he or she is engaged in research and is observing/interacting with other players for the purposes of gathering research data? How does the research project impact upon the community and general game play? Is the research project permitted under the Terms of Service?

Colvin and Lanigan (2005: 38) suggest researchers

Seek permission from Web site owners and group moderators before posting recruitment announcements, Then, preface the recruitment announcement with a statement that delineates the permission that has been granted, including the contact person and date received. Identify a concluding date (deadline) for the research study and make every effort to remove recruitment postings, which often become embedded within Web site postings.

Barratt and Lenton, among others, agree:

It is critical, therefore, to form partnerships with online community moderators by not only asking their permission to post the request, but eliciting their feedback and support as well (2010: 71).

Mendelson (2007) and Smith and Leigh (1997) note that recruitment notices need to contain more information than the typical flyers or advertisements used for newspaper advertisements. Mentioning the approval of moderators is important for establishing authenticity, and so is providing detailed information about the study and how to contact both the researchers and the appropriate research ethics board.

Given the array of techniques possible for recruitment, the concept of “research spam” requires attention. The Council of American Survey Research warns

Research Organizations should take steps to limit the number of survey invitations sent to targeted respondents by email solicitations or other methods over the Internet so as to avoid harassment and response bias caused by the repeated recruitment and participation by a given pool (or panel) of data subjects (CASRO 2011: I.B.3).

Ultimately, researchers using Internet recruitment measures must ensure that potential participants are getting enough information in both the recruitment materials and any subsequent consent documents. Researchers must ensure that recruitment methods do not lead to an individual being identified without their permission, and if such identification is possible, are there significant risks involved?

4.3 Informed Consent

As the cornerstone of human subjects protections, informed consent means that participants are voluntarily participating in the research with adequate knowledge of relevant risks and benefits. Providing informed consent typically includes the researcher explaining the purpose of the research, the methods being used, the possible outcomes of the research, as well as associated risks or harms that the participants might face. The process involves providing the recipient clear and understandable explanations of these issues in a concise way, providing sufficient opportunity to consider them and enquire about any aspect of the research prior to granting consent, and ensuring the subject has not been coerced into participating. Gaining consent in traditional research is typically done verbally or in writing, either in a face-to-face meeting where the researcher reviews the document, through telephone scripts, through mailed documents, fax, or video, and can be obtained with the assistance of an advocate in the case of vulnerable populations. Most importantly, informed consent was built on the ideal of “process” and the verification of understanding, and thus, requires an ongoing communicative relationship between and among researchers and their participants. The emergence of the Internet as both a tool and a venue for research has introduced challenges to this traditional approach to informed consent.

In most regulatory frameworks, there are instances when informed consent might be waived, or the standard processes of obtaining informed consent might be modified, if approved by a research ethics board. [ 5 ] Various forms of Internet research require different approaches to the consent process. Some standards have emerged, depending on venue (i.e., an online survey platform versus a private Facebook group). However, researchers are encouraged to consider waiver of consent and/or documentation, if appropriate, by using the flexibilities of their extant regulations.

Where consent is required but documentation has been waived by an ethical review board, a “portal” can be used to provide consent information. For example, a researcher may send an email to the participant with a link a separate portal or site information page where information on the project is contained. The participant can read the documentation and click on an “I agree” submission. Rosser et al. (2010) recommend using a “chunked” consent document, whereby individuals can read specific sections, agree, and then continue onwards to completion of the consent form, until reaching the study site.

In addition to portals, researchers will often make use of consent cards or tokens; this alleviates concerns that unannounced researcher presence is unacceptable, or, that a researcher’s presence is intrusive to the natural flow and movement of a given locale. Hudson and Bruckman (2004, 2005) highlighted the unique challenges in gaining consent in chat rooms, while Lawson (2004) offers an array of consent possibilities for synchronous computer-mediated communication. There are different practical challenges in the consent process in Internet research, given the fluidity and temporal nature of Internet spaces.

If documentation of consent is required, some researchers have utilized alternatives such as electronic signatures, which can range from a simple electronic check box to acknowledge acceptance of the terms to more robust means of validation using encrypted digital signatures, although the validity of electronic signatures vary by jurisdiction.

Regardless of venue, informed consent documents are undergoing changes in the information provided to research participants. While the basic elements of consent remain intact, researchers must now acknowledge with less certainty specific aspects of their data longevity, risks to privacy, confidentiality and anonymity (see §4.1 Privacy, above ), and access to or ownership of data. Research participants must understand that their terms of service or end user license agreement consent is distinct from their consent to participate in research. And, researchers must address and inform participants/subjects about potential risk of data intrusion or misappropriation of data if subsequently made public or available outside of the confines of the original research. Statements should be revised to reflect such realities as cloud storage (see §4.4 below ) and data sharing.

For example, Aycock et al. (2012: 141) describe a continuum of security and access statements used in informed consent documents:

• “No others will have access to the data”
• “Anonymous identifiers will be used during all data collection and analysis and the link to the subject identifiers will be stored in a secure manner”
• “Data files that contain summaries of chart reviews and surveys will only have study numbers but no data to identify the subject. The key [linking] subject names and these study identifiers will be kept in a locked file”
• “Electronic data will be stored on a password protected and secure computer that will be kept in a locked office. The software ‘File Vault’ will be used to protect all study data loaded to portable laptops, flash drives or other storage media. This will encode all data… using Advanced Encryption Standard with 128-bit keys (AES-128)”

This use of encryption in the last statement may be necessary in research including sensitive data, such as medical, sexual, health, financial, and so on. Barratt and Lenton (2010), in their research on illicit drug use and online forum behaviors, also provide guidance about use of secure transmission and encryption as part of the consent process.

In addition to informing participants about potential risks and employing technological protections, NIH-funded researchers whose work includes projects with identifiable, sensitive information will automatically be issued a Certificate of Confidentiality:

CoCs protect the privacy of research subjects by prohibiting disclosure of identifiable, sensitive research information to anyone not connected to the research except when the subject consents or in a few other specific situations (NIH 2021 [ OIR ]).

However, these do not protect against release of data outside of the U.S. Given the reality of Internet research itself, which inherently spans borders, new models may be in order to ensure confidentiality of data and protections of data. Models of informed consent for traditional international research are fundamentally challenging due to cultural specificity and norms (Annas 2009; Boga et al. 2011; Krogstad et al. 2010); with Internet research, where researchers may be unaware of the specific location of an individual, consent takes on significantly higher demands. While current standards of practice show that consent models stem from the jurisdiction of the researcher and sponsoring research institution, complications arise in the face of age verification, age of majority/consent, reporting of adverse effects or complaints with the research process, and authentication of identity. Various jurisdictional laws around privacy are relevant for the consent process; a useful tool is Forrester’s Data Privacy Heat Map, which relies on in-depth analyses of the data privacy-related laws and cultures of countries around the world, helping researchers design appropriate approaches to privacy and data protection given the particular context (see OIR ).

In addition, as more federal agencies and funding bodies across the globe encourage making research data publicly-available (i.e., NSF, NIH, Wellcome Trust, Research Councils U.K.), the language used in consent documents will change accordingly to represent this intended longevity of data and opportunities for future, unanticipated use. Given the ease with which Internet data can flow between and among Internet venues, changes in the overall accessibility of data might occur (early “private” newsgroup conversations were made “publicly searchable” when Google bought DejaNews), and reuse and access by others is increasingly possible with shared datasets. Current data sharing mandates must be considered in the consent process. Alignment between a data sharing policy and an informed consent document is imperative. Both should include provisions for appropriate protection of privacy, confidentiality, security, and intellectual property.

There is general agreement in the U.S. that individual consent is not necessary for researchers to use publicly available data, such as public Twitter feeds. Recommendations were made by The National Human Subjects Protection Advisory Committee (NHRPAC) in 2002 regarding publicly available data sets (see OIR ). Data use or data restriction agreements are commonly used and set the parameters of use for researchers.

The U.K. Data Archive (2011 [ OIR ]) provides guidance on consent and data sharing:

When research involves obtaining data from people, researchers are expected to maintain high ethical standards such as those recommended by professional bodies, institutions and funding organisations, both during research and when sharing data. Research data — even sensitive and confidential data — can be shared ethically and legally if researchers pay attention, from the beginning of research, to three important aspects: • when gaining informed consent, include provision for data sharing • where needed, protect people’s identities by anonymising data • consider controlling access to data These measures should be considered jointly. The same measures form part of good research practice and data management, even if data sharing is not envisioned. Data collected from and about people may hold personal, sensitive or confidential information. This does not mean that all data obtained by research with participants are personal or confidential.

Data sharing made public headlines in 2016 when a Danish researcher released a data set comprised of scraped data from nearly 70,000 users of the OkCupid online dating site. The data set was highly reidentifiable and included potentially sensitive information, including usernames, age, gender, geographic location, what kind of relationship (or sex) they’re interested in, personality traits, and answers to thousands of profiling questions used by the site. The researcher claimed the data were public and thus, such sharing and use was unproblematic. Zimmer (2016) was among many privacy and ethics scholars who critiqued this stance.

The Danish researchers did not seek any form of consent or debriefing on the collection and use of the data, nor did they have any ethics oversight. Many researchers and ethics boards are, however, attempting to mitigate some of these ethical concerns by including blanket statements in their consent processes, indicating such precautions for research participants. For example,

I understand that online communications may be at greater risk for hacking, intrusions, and other violations. Despite these possibilities, I consent to participate.

A more specific example comes from the Canadian context when researchers propose to use specific online survey tools hosted in the United States; REBs commonly recommend the following type language for use in informed consent documents:

Please note that the online survey is hosted by Company ABC which is a web survey company located in the U.S.A. All responses to the survey will be stored and accessed in the U.S.A. This company is subject to U.S. Laws, in particular, to the U.S. Patriot Act/Domestic Security Enhancement Act that allows authorities access to the records that your responses to the questions will be stored and accessed in the U.S.A. The security and private policy for Company ABC can be viewed at http://…/. [ 6 ]

Researchers are also encouraged to review the Terms of Use and Terms of Service of the application that are being used, demonstrating its details to the REB in the application and informing participants of such details in the informed consent form or script. Researchers are also encouraged to consider broader contextual factors of the data source and research goals when weighing the possible violation of a platform’s Terms of Service (Fiesler, Beard, & Keegan 2020).

Internet research poses particular challenges to age verification, assent and consent procedures, and appropriate methodological approaches with minors. Age of consent varies across countries, states, communities, and locales of all sorts. For research conducted or supported by U.S. federal agencies bound by the Common Rule, children are

persons who have not attained the legal age for consent [18, in the U.S.] to treatments or procedures involved in the research, under the applicable law of the jurisdiction in which the research will be conducted (45 C.F.R. § 46.402(a) 2009).

Goldfarb (2008) provides an exhaustive discussion of age of majority across the U.S. states, with a special focus on clinical research , noting children must be seven or older to assent to participation (see 45 C.F.R. § 46 Subpart D 2009).

Spriggs (2010), from the Australian context, notes that while no formal guidance exists on Internet research and minors under the National Statement , she advises:

Parental consent may be needed when information is potentially identifiable. Identifiable information makes risks to individuals higher and may mean that the safety net of parental consent is preferable. There is also a need to consider whether seeking parental consent would make things worse e.g., by putting a young person from a dysfunctional home at risk or result in disclosure to the researcher of additional identifying information about the identity and location of the young person. Parental consent may be “contrary to the best interests” of the child or young person when it offers no protection or makes matters worse (2010: 30).

To assist with the consent process, age verification measures can be used. These can range from more technical software applications to less formal knowledge checks embedded in an information sheet or consent document. Multiple confirmation points (asking for age, later asking for year of birth, etc.) are practical measures for researchers. Depending on the types of data, sensitivity of data, use of data, researchers and boards will carefully construct the appropriate options for consent, including waiver of consent, waiver of documentation, and/or waiver of parental consent.

Recent developments in cloud computing platforms have led to unique opportunities—and ethical challenges—for researchers. Cloud computing describes the deployment of computing resources via the Internet, providing on-demand, flexible, and scalable computing from remote locations. Examples include web-based email and calendaring services provided by Google or Yahoo, online productivity platforms like Google Docs or Microsoft Office 365, online file storage and sharing platforms like Dropbox or Box.net, and large-scale application development and data processing platforms such as Google Apps, Facebook Developers Platform, and Amazon Web Services.

Alongside businesses and consumers, researchers have begun utilizing cloud computing platforms and services to assist in various tasks, including subject recruitment, data collection and storage, large-scale data processing, as well as communication and collaboration (Allan 2011 [ OIR ]; X. Chen et al. 2010 [ OIR ]); Simmhan et al. 2008; Simmhan et al. 2009).

As reliance on cloud computing increases among researchers, so do the ethical implications. Among the greatest concerns is ensuring data privacy and security with cloud-based services. For researchers sharing datasets online for collaborative processing and analysis, steps must be taken to ensure only authorized personnel have access to the online data that might contain PII, but also that suitable encryption is used for data transfer and storage, and that the cloud service provider maintains sufficient security to prevent breaches. Further, once research data is uploaded to a third-party cloud provider, attention must be paid to the terms of service for the contracted provider to determine what level of access to the data, if any, might be allowed to advertisers, law enforcement, or other external agents.

Alongside the privacy and security concerns, researchers also have an ethical duty of data stewardship which is further complicated when research data is placed in the cloud for storage or processing. Cloud providers might utilize data centers spread across the globe, meaning research data might be located outside the United States, and its legal jurisdictions. Terms of service might grant cloud providers a license to access and use research data for purposes not initially intended or approved of by the subjects involved. Stewardship may require the prompt and complete destruction of research data, a measure complicated if a cloud provider has distributed and backed-up the data across multiple locations.

A more unique application of cloud computing for research involves the crowdsourcing of data analysis and processing functions, that is, leveraging the thousands of users of various online products and services to complete research related tasks remotely. Examples include using a distributed network of video game players to assist in solving protein folding problems (Markoff 2010), and leveraging Amazon’s Mechanical Turk crowdsourcing marketplace platform to assist with large scale data processing and coding functions that cannot be automated (Conley & Tosti-Kharas 2014; J. Chen et al. 2011). Using cloud-based platforms can raise various critical ethical and methodological issues.

First, new concerns over data privacy and security emerge when research tasks are widely distributed across a global network of users. Researchers must take great care in ensuring research data containing personal or sensitive information isn’t accessible by outsourced labor, or that none of the users providing crowdsourced labor are able to aggregate and store their own copy of the research dataset. Second, crowdsourcing presents ethical concerns over trust and validity of the research process itself. Rather than a local team of research assistants usually under a principal investigator’s supervision and control, crowdsourcing tends to be distributed beyond the direct management or control of the researcher, providing less opportunity to ensure sufficient training for the required tasks. Thus, researchers will need to create additional means of verifying data results to confirm tasks are completed properly and correctly.

Two additional ethical concerns with crowdsourcing involve labor management and authorship. Mechanical Turk users were not originally intended to be research subjects, first and foremost. However, researchers using Mechanical Turks must ensure that the laborers on the other end of the cloud-based relationship are not being exploited, that they are legally eligible to be working for hire, and that the incentives provided are real, meaningful, and appropriate (Scholz 2008; Williams 2010 [ OIR ).

Finally, at the end of a successful research project utilizing crowdsourcing, a researcher may be confronted with the ethical challenge of how to properly acknowledge the contributions made by (typically anonymous) laborers. Ethical research requires the fair and accurate description of authorship. Disciplines vary as to how to report relative contributions made by collaborators and research assistants, and this dilemma increases when crowdsourcing is used to assist with the research project.

Algorithmic processing is a corollary of big data research, and newfound ethical considerations have emerged. From “algorithmic harms” to “predictive analytics”, the power of today’s algorithms exceeds long-standing privacy beliefs and norms. Specifically, the National Science and Technology Council note:

“Analytical algorithms” as algorithms for prioritizing, classifying, filtering, and predicting. Their use can create privacy issues when the information used by algorithms is inappropriate or inaccurate, when incorrect decisions occur, when there is no reasonable means of redress, when an individual’s autonomy is directly related to algorithmic scoring, or when the use of predictive algorithms chills desirable behavior or encourages other privacy harms. (NSTC 2016: 18).

While the concept of big data is not new, and the term has been in technical discourses since the 1990s, public awareness and response to big data research is much more recent. Following the rise of social media-based research, Buchanan (2016) has delineated the emergence of “big data”-based research from 2012 to the present, with no signs of an endpoint.

Big data research is challenging for research ethics boards, often presenting what the computer ethicist James Moor would call “conceptual muddles”: the inability to properly conceptualize the ethical values and dilemmas at play in a new technological context. Subject privacy, for example, is typically protected within the context of research ethics through a combination of various tactics and practices, including engaging in data collection under controlled or anonymous environments, limiting the personal information gathered, scrubbing data to remove or obscure personally identifiable information, and using access restrictions and related data security methods to prevent unauthorized access and use of the research data itself. The nature and understanding of privacy become muddled, however, in the context of big data research, and as a result, ensuring it is respected and protected in this new domain becomes challenging.

For example, the determination of what constitutes “private information”—and thus triggering particular privacy concerns—becomes difficult within the context of big data research. Distinctions within the regulatory definition of “private information”—namely, that it only applies to information which subjects reasonably expect is not normally monitored or collected and not normally publicly available—become less clearly applicable when considering the data environments and collection practices that typify big data research, such as the wholesale scraping of Facebook news feed content or public OKCupid accounts.

When considered through the lens of the regulatory definition of “private information”, social media postings are often considered public, especially when users take no visible, affirmative steps to restrict access. As a result, big data researchers might conclude subjects are not deserving of particular privacy consideration. Yet, the social media platforms frequently used for big data research purposes represent a complex environment of socio-technical interactions, where users often fail to understand fully how their social activities might be regularly monitored, harvested, and shared with third parties, where privacy policies and terms of service are not fully understood and change frequently, and where the technical infrastructures and interfaces are designed to make restricting information flows and protecting one’s privacy difficult.

As noted in §4.1 above it becomes difficult to confirm a user’s intention when sharing information on a social media platform, and whether users recognize that providing information in a social environment also opens it up for widespread harvesting and use by researchers. This uncertainty in the intent and expectations of users of social media and internet-based platforms—often fueled by the design of the platforms themselves—create numerous conceptual muddles in our ability to properly alleviate potential privacy concerns in big data research.

The conceptual gaps that exist regarding privacy and the definition of personally identifiable information in the context of big data research inevitably lead to similar gaps regarding when informed consent is necessary. Researchers mining Facebook profile information or public Twitter streams, for example, typically argue that no specific consent is necessary due to the fact the information was publicly available. It remains unknown whether users truly understood the technical conditions under which they made information visible on these social media platforms or if they foresaw their data being harvested for research purposes, rather than just appearing onscreen for fleeting glimpses by their friends and followers (Fiesler & Proferes, 2018). In the case of the Facebook emotional contagion experiment (Kramer, Guillory, & Hancock 2014), the lack of obtaining consent was initially rationalized through the notion that the research appeared to have been carried out under Facebook’s extensive terms of service, whose data use policy, while more than 9,000 words long, does make passing mention to “research”. It was later revealed, however, that the data use policy in effect when the experiment was conducted never mentioned “research” at all (Hill 2014).

Additional ethical concerns have arisen surrounding the large scale data collection practices connected to machine learning and the development of artificial intelligence. For example, negative public attention have surrounded algorithms designed to infer sexual orientation from photographs and facial recognition algorithms trained on videos of transgender people. In both cases, ethical concerns have been raised about both the purpose of these algorithms and the fact that the data that trained them (dating profile photos and YouTube videos, respectively) was “public” but collected from potentially vulnerable populations without consent (Metcalf 2017; Keyes 2019). While those building AI systems cannot always control the conditions under which the data they utilize is collected, their increased use of big datasets captured from social media or related sources raises a number of concerns beyond what typically is considered part of the growing focus on AI ethics: fairness, accountability and transparency in AI can only be fully possible when data collection is achieved in a fair, ethical, and just manner (Stahl & Wright 2018; Kerry 2020).

The Facebook emotional contagion experiment, discussed above, is just one example in a larger trend of big data research conducted outside of traditional university-based research ethics oversight mechanisms. Nearly all online companies and platforms analyze data and test theories that often rely on data from individual users. Industry-based data research, once limited to marketing-oriented “A/B testing” of benign changes in interface designs or corporate communication messages, now encompasses information about how users behave online, what they click and read, how they move, eat, and sleep, the content they consume online, and even how they move about their homes. Such research produces inferences about individuals’ tastes and preferences, social relations, communications, movements, and work habits. It implies pervasive testing of products and services that are an integral part of intimate daily life, ranging from connected home products to social networks to smart cars. Except in cases where they are partnering with academic institutions, companies typically do not put internal research activities through a formal ethical review process, since results are typically never shared publicly and the perceived impact on users is minimal.

The growth of industry-based big data research, however, presents new risks to individuals’ privacy, on the one hand, and to organizations’ legal compliance, reputation, and brand, on the other hand. When organizations process personal data outside of their original context, individuals may in some cases greatly benefit, but in other cases may be surprised, outraged, or even harmed. Soliciting consent from affected individuals can be impractical: Organizations might collect data indirectly or based on identifiers that do not directly match individuals’ contact details. Moreover, by definition, some non-contextual uses—including the retention of data for longer than envisaged for purposes of a newly emergent use—may be unforeseen at the time of collection. As Crawford and Schultz (2014) note,

how does one give notice and get consent for innumerable and perhaps even yet-to-be-determined queries that one might run that create “personal data”? (2014: 108)

With corporations developing vast “living laboratories” for big data research, research ethics has become a critical component of the design and oversight of these activities. For example, in response to the controversy surrounding the emotional contagion experiment, Facebook developed an internal ethical review process that, according to its facilitators,

leverages the company’s organizational structure, creating multiple training opportunities and research review checkpoints in the existing organizational flow (Jackman & Kanerva 2016: 444).

While such efforts are important and laudable, they remain open for improvement. Hoffmann (2016), for example, has criticized Facebook for launching

an ethics review process that innovates on process but tells us little about the ethical values informing their product development.

Further, in their study of employees doing the work of ethics inside of numerous Silicon Valley companies, Metcalf and colleagues found considerable tension between trying to resolve thorny ethical dilemmas that emerge within an organization’s data practices and the broader business model and corporate logic that dominates internal decision-making (Metcalf, Moss, & boyd 2019).

While many researchers and review boards across the world work without formal guidance, many research ethics boards have developed guidelines for Internet research. While many such guidelines exist, the following provides examples for researchers preparing for an REB review, or for boards developing their own policies.

• Bard College (New York) Guidelines for Internet Research
• Loyola University Chicago Policy for Online Survey Research Involving Human Participants
• Penn State Guidelines for Computer- and Internet-Based Research Involving Human Participants
• U.K. Data Archive Further Resources
• University of California-Berkeley Data Security and Human Research Data Risk Assessment Matrix (pdf)
• University of Connecticut Guidance for Computer and Internet-Based Research Involving Human Participants

Additional resources are found in Other Internet Resources below.

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• Banks, Will and Michelle Eble, 2007, “Digital Spaces, Online Environments, and Human Participant Research: Interfacing with Institutional Review Boards”, in Digital Writing Research: Technologies, Methodologies, and Ethical Issues , Heidi A. McKee and Dànielle Nicole DeVoss (eds.), Cresskill, NJ: Hampton Press, pp. 27–47.
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• Blackstone, Mary, Lisa Given, Joseph Levy, Michelle McGinn, Patrick O’Neill, Ted Palys, and Will van den Hoonaard, 2008, Extending the Spectrum: The TCPS and Ethical Issues Involving Internet-Based Research , Interagency Advisory Panel and Secretariat on Research Ethics, Ottawa, Canada. [ Blackstone et al. 2008 available online ]
• Boehlefeld, Sharon Polancic, 1996, “Doing the Right Thing: Ethical Cyberspace Research”, The Information Society , 12(2): 141–152. doi:10.1080/713856136
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• Buchanan, Elizabeth A. (ed.), 2004, Readings in Virtual Research Ethics: Issues and Controversies , Hershey, PA: Information Science Publishing.
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• –––, 2016, “Ethics in Digital Research”, in Handbuch Soziale Praktiken und Digitale Alltagswelten , Heidrun Friese, Gala Rebane, Marcus Nolden, and Miriam Schreiter (eds.), Wiesbaden: Springer Fachmedien Wiesbaden, pp. 1–9. doi:10.1007/978-3-658-08460-8_47-1
• Buchanan, Elizabeth A. and Charles M. Ess, 2008, “Internet Research Ethics: The Field and Its Critical Issues”, in The Handbook of Information and Computer Ethics , Kenneth Einar Himma and Herman T. Tavani (eds.), Hoboken, NJ: John Wiley & Sons, Inc., pp. 273–292. doi:10.1002/9780470281819.ch11
• –––, 2009, “Internet Research Ethics and the Institutional Review Board: Current Practices and Issues”, ACM SIGCAS Computers and Society , 39(3): 43–49. doi:10.1145/1713066.1713069
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• Buchanan, Elizabeth, John Aycock, Scott Dexter, David Dittrich, and Erin Hvizdak, 2011, “Computer Science Security Research and Human Subjects: Emerging Considerations for Research Ethics Boards”, Journal of Empirical Research on Human Research Ethics , 6(2): 71–83. doi:10.1525/jer.2011.6.2.71
• Carpenter, Katherine J. and David Dittrich, 2012, “Bridging the Distance: Removing the Technology Buffer and Seeking Consistent Ethical Analysis in Computer Security Research”, in Digital Ethics: Research & Practice (Digital Formations 85), Don Heider and Adrienne Massanari (eds.), New York: Peter Lang, pp. 1–29.
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• Crawford, Kate and Jason Schultz, 2014, “Big Data and Due Process: Toward a Framework to Redress Predictive Privacy Harms”, Boston College Law Review , 55(1): 93–128.
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• Ess, Charles and the Association of Internet Researchers (AoIR) Ethics Working committee, 2002, “Ethical Decision-Making and Internet Research: Recommendations from the AoIR Ethics Working Committee”, Approved by the AoIR, 27 November 2002. [ Ess and AoIR 2002 available online ]
• Eysenbach, Gunther, 1999, “Welcome to the Journal of Medical Internet Research”, Journal of Medical Internet Research , 1(1): e5. doi:10.2196/jmir.1.1.e5
• Eysenbach, Gunther and James E. Till, 2001, “Ethical Issues in Qualitative Research on Internet Communities”, BMJ , 323(7321): 1103–1105. doi:10.1136/bmj.323.7321.1103
• Fairfield, Joshua A., 2012, “Avatar Experimentation: Human Subjects Research in Virtual Worlds”, U.C. Irvine Law Review , 2: 695–772.
• Federal Register, 2011, “Submission for Review and Comment: ‘The Menlo Report: Ethical Principles Guiding Information and Communication Technology Research’” (“Menlo Report”) for the Department of Homeland Security (DHS), Science and Technology, Cyber Security Division (CSD), Protected Repository for the Defense of Infrastructure Against Cyber Threats (PREDICT)”, 28 December 2011, Volume 76, Number 249, Docket No. DHS-2011-0074. [ Federal Register 2011 available online ]
• –––, 2017, “Federal Policy for the Protection of Human Subjects”, 19 January 2017, Volume 82, Number 12 [ Federal Register 2017 available online ]
• Fiesler, Casey, Nathan Beard, and Brian C. Keegan, 2020, “No Robots, Spiders, or Scrapers: Legal and Ethical Regulation of Data Collection Methods in Social Media Terms of Service”, Proceedings of the International AAAI Conference on Web and Social Media , 14: 187–196. [ Fiesler, Beard, and Keegan 2020 available online ]
• Fiesler, Casey, Jeff Hancock, Amy Bruckman, Michael Muller, Cosmin Munteanu, and Melissa Densmore, 2018, “Research Ethics for HCI: A Roundtable Discussion”, in Extended Abstracts of the 2018 CHI Conference on Human Factors in Computing Systems , , Montreal QC Canada: ACM, 1–5. doi:10.1145/3170427.3186321
• Fiesler, Casey and Nicholas Proferes, 2018, “‘Participant’ Perceptions of Twitter Research Ethics”, Social Media + Society , 4(1), first online 10 March 2018. doi:10.1177/2056305118763366
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• Fossheim, Hallvard and Helene Ingierd (eds.), 2016, Internet Research Ethics: , Oslo: Cappelen Damm Akademisk/NOASP. doi:10.17585/noasp.3.1
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• Frauenberger, Christopher, Amy S. Bruckman, Cosmin Munteanu, Melissa Densmore, and Jenny Waycott, 2017, “Research Ethics in HCI: A Town Hall Meeting”, in Proceedings of the 2017 CHI Conference Extended Abstracts on Human Factors in Computing Systems – CHI EA ’17 , Denver: ACM Press, pp. 1295–1299. doi:10.1145/3027063.3051135
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• [GDPR] General Data Protection Regulation (GDPR), 2016, “Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46”. [ available online ]
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• Hubach, Randolph D., Andrew O’Neil, Mollie Stowe, Zachary Giano, Brenda Curtis, and Celia B. Fisher, forthcoming, “Perceived Confidentiality Risks of Mobile Technology-Based Ecologic Momentary Assessment to Assess High-Risk Behaviors Among Rural Men Who Have Sex with Men”, Archives of Sexual Behavior , first online: 20 February 2020. doi:10.1007/s10508-019-01612-x
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How to cite this entry . Preview the PDF version of this entry at the Friends of the SEP Society . Look up topics and thinkers related to this entry at the Internet Philosophy Ontology Project (InPhO). Enhanced bibliography for this entry at PhilPapers , with links to its database.

Other Internet Resources

• Allan, Rob, 2012, “ Cloud and Web 2.0 Services for Supporting Research ”.
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United States

• 45 C.F.R. § 46, “Protection of Human Subjects”, and in particular the Common Rule, 45 C.F.R. 46 Subpart A
• 45 C.F.R. § 164.514, “Other requirements relating to uses and disclosures of protected health information”
• [OHRP] U.S Department of Health and Human Services, 2008, “Office for Human Research Protections”, [ Office for Human Research Protection ]
• The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research
• U.S. Department of Health and Human Services: Can an electronic signature be used to document consent on parental permission?
• U.S. Department of Health and Human Services: What are the basic elements of informed consent?
• Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans , Canada
• European Parliament and Council of European Union (2016) Regulation (EU) 2016/679. ... Data Protection Act 2018, c. 12 [ Data Protection Act 2018 available online ]
• American Counseling Association: Ethics and Professional Standards , 2014 revision
• American Psychological Association: Advisory Group on Conduction Research on the Internet
• Association of Internet Researchers Ethics Guidelines
• Journal of Empirical Research on Human Research Ethics
• Journal of Medical Internet Research
• MethodSpace , SAGE Publishing hosted.
• Research Ethics Blog , run by Nancy Walton.
• Research Ethics Guidelines for Internet Research (pdf) , The (Norwegian) National Committee for Research Ethics in the Social Sciences and the Humanities, 2003.
• Forrester’s Global Data Protection and Privacy Heatmap
• Council of European Social Science Data Archives (CESSDA)
• Foundation Texts of the learning module, Current Issues in Research Ethics: Privacy and Confidentiality , Joyce Plaza and Ruth Fischbach, Columbia University, New York: Columbia Center for New Media Teaching & Learning.
• Ethical and Legal Aspects of Human Subjects Research in Cyberspace , American Association for the Advancement of Science.

ethics, biomedical: clinical research | ethics: deontological | informed consent | privacy

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31 Internet research ethics

Charles Ess is Professor Emeritus, Department of Media and Communication, University of Oslo, Norway. He works across the intersections of philosophy, computing, applied ethics, comparative philosophy and religious studies, and media studies, with emphases on internet research ethics, digital religion, virtue ethics, social robots, and AI. Ess has published extensively on ethical pluralism, culturally variable ethical norms and communicative preferences in cross-cultural approaches to Information and Computing Ethics, and their applications to everyday digital media technologies; his Digital Media Ethics, 3rd edition, was published in early 2020. His current work concerns meta-theoretical and meta-disciplinary complementarities between ethics and the social sciences, applied ethics in ICT design and implementation (especially social robots and AI), and research ethics in Human-Machine Communication.

• Published: 18 September 2012
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This article discusses Internet research ethics, which promises to become an ever-more robust and significant field within information ethics, on the one hand, and research ethics more broadly, on the other. As new venues emerge for human–human and human–machine interaction, it seems certain that new ethical conundrums will emerge. But the overall history of Internet research ethics includes at least some convergence on key values and rights, while at the same time preserving important local differences with regard to approaches to ethical decision making and implementation of basic rights and principles – even across East–West divides. This trajectory suggests not the certainty of finding resolutions to every ethical problem that comes along, but rather the sense of finding such resolutions in the face of new difficulties, with sufficient frequency and success to encourage further efforts to do so.

Introduction: why Internet research ethics?

Gold mines and/or land mines promises and problems in internet research.

As the Internet both developed and exponentially extended its reach—first within the United States and then well beyond its borders (though not, of course, without disparities and inequalities)—researchers from a range of disciplines, including psychology, communication, sociology, anthropology and the humanities, quickly recognized that the various venues of the Internet (email, listservs, USENET groups, MUDs and MOOs, web pages, ICQ and its descendents such as Instant Messenger, etc.) facilitated distinctive new ways for human beings to interact with one another. These new places and modes of interaction deserved careful study. Moreover, the ready-made data sets automatically generated, for example, by listserv and USENET archives, the accessibility of venues, and, in many cases, the anonymity researchers could enjoy as ‘lurkers’, made study of human interactions in these new contexts seem like a researcher's dream.

Like much of the other early Internet euphoria and utopianism, researchers' early enthusiasm soon encountered new difficulties—including new sorts of ethical problems. Of course, ethical difficulties in research involving human subjects are nothing new. As is well-known, following clear abuse of human beings in the name of research both during the Second World War and in other (in)famous cases—for example the Tuskegee Institute study (Pence 1990 : 184–205)—professional ethics codes, declarations and national and international laws emerged intended to protect basic human rights, beginning with the right to informed consent to experimental procedures on one's own body. 1 At the same time, however, while such codes were well established especially in the United States—and enforced, for example, by its distinctive matrix of Institutional Review Boards 2 —prevailing views of the Internet emphasized its creating a new ‘Cyberspace’ and attendant forms of human communication and identity that were radically different from the offline world—first of all, because human beings could precisely escape their material bodies to develop and play with new forms of ‘virtual’ identity online. Especially as almost all communication online involved texts generated by virtual identities that may have been entirely untraceable to an offline person—it was by no means clear that the human subjects protections codes, developed in medicine and the social sciences to prevent harm to offline persons and minds, had any relevance to research on online communication and interaction. 3

But research history repeated itself—first of all, as a number of incidents and cases made clear that it is indeed possible to harm minds and identities, if not bodies, online. In the US/English-speaking context, for example, a male psychologist made bad research history by pretending to be a disfigured and handicapped female while chatting with women, ostensibly in the name of better understanding female psychology and interaction patterns (Van Gelder [ 1985 ], 1991 ; cf. Mann 2003 : 36). When he revealed his ‘real’ (i.e., offline/embodied) self to be male, predictable outrage followed—first of all, from the women participants who (rightly) felt deceived into relationships of trust and intimacy online in which they revealed aspects of themselves that they otherwise would not have shared with a male psychologist. Even more spectacularly, the (in)famous ‘rape in cyberspace’ (Dibbell 1993) opened up extensive discussion, for example, as to whether words and speech could , in at least extreme instances, indeed harm real human beings in ethically unacceptable ways. The emergent discussion of Internet research ethics (IRE) then crystallized in a watershed special issue of The Information Society (e.g., Herring 1996 ; King 1996 ), followed by a national-level workshop on IRE in 1999, organized by the US NIH Office for Protection from Research Risks and the American Association for the Advancement of Science (Frankel and Siang 1999). Within the discipline of psychology alone, as Peden and Flashinski point out, Michalak and Szabo (1998) attempted to develop guidelines for Internet researchers based on general standards, personal experience and the 1992 ethical standards established by the American Psychological Association (Peden and Flashinski 2004 : 3). In 2000, Azar focused on the difficulties of informed consent and debriefing in online research—along with the problem that conducting a study online makes public a researcher's procedures and methods, thus opening up the possibility of intellectual piracy (Azar 2000 , cited in Peden and Flashinski 2004 : 5) In that same year, finally, Peden and Flashinski note the publication of Reips' guidelines (Reips 2000 )—which they in turn use to evaluate a range of online surveys and experiments. They found that while many Internet-based experiments and surveys complied with requirements for avoiding deception and excessive inducements, they did less well with regard to assessing informed consent and debriefing (Peden and Flashinski 2004 : 14). In addition, while 45% of the studies and experiments asked for personal information (e.g., name, phone number)—only 20% used secure sites, and only 19% created separate data files for personal information and responses (2004: 15). They comment: ‘Although psychologists are expected to protect confidential information, our results indicate considerable room for improvement’ (2004:15).

More broadly, a growing body of literature, composed primarily of working researchers' reflections on the ethical difficulties they encountered in their online research (e.g., Sveningsson 2001 ) further added to the resources then taken up by the ethics working committee of the Association of Internet Researchers (AoIR), charged in 2000 with developing interdisciplinary and international guidelines for online research. The first version of these guidelines was approved by the AoIR membership in 2002 , and has found extensive use in the English-speaking world (see AoIR 2002 ; Ess 2004). More specifically, the German Society for Online Research and others has established a set of guidelines for Internet-based surveys that include ethical considerations (Arbeitskreis Deutscher Markt- und Sozialforschungsinstitute et al. 2001 ).

Some basic issues in IRE

Sources, frameworks, and initial considerations.

The development of IRE in Western countries has drawn from four major sources:

The models of human subjects research and human subjects protections in the life sciences—i.e., medical ethics, bioethics, etc.—and social sciences—e.g., psychology (Kraut et al. 2004 );

Professional ethics—including codes for computer-related professions (e.g., Association for Computing Machinery 1992 etc.);

Ethical codes in the social sciences and the humanities—where the latter do not see human beings online as ‘subjects’ to be protected, but rather as authors or amateur artists whose work is public and needs only the protection of copyright, but not, for example, anonymity, informed consent, etc. (e.g., Bruckman 2002); and

The philosophical work on philosophy of information and information ethics (e.g., Floridi 2003 ).

Underlying these more specific approaches are a number of Western ethical frameworks that require at least brief definition. Deontology , associated in the modern era especially with Kant, emphasizes the primary importance of respecting the basic rights of human beings as autonomous beings—i.e., free and thereby capable of establishing their own moral norms and rules. The primary requirement to respect this essential freedom then issues in a range of rights, duties, obligations, and principles—including those central to shared conceptions of human subjects' protections, i.e., rights to privacy, confidentiality, anonymity, and informed consent—and the correlative duties of researchers to respect and protect these rights, no matter the ‘costs’ of doing so (e.g., increased complexity in research design and implementation—or even, in a worst-case scenario, the necessity to abandon a research project because it would unavoidably violate these basic rights and duties). This philosophical orientation appears to be emphasized, for example, in approaches to research ethics in many (but by no means all) European countries—by contrast, that is, with consequentialist approaches, including the utilitarianism characteristic of ethical decision-making in the Anglo-American spheres. Utilitarianism stresses an effort to balance real and potential costs (usually, to a few) and benefits (usually, to the many): from a utilitarian perspective, if research is likely to contribute to the greatest good for the greatest number (e.g., in terms of improvements in health, social welfare, the environment, etc.), such benefits may ethically trump their costs—even such costs as subjects' experiencing suffering, the loss of rights and autonomy, etc., during the course of a research project. So in the US and the UK, for example, if the anticipated outcomes of research are likely to benefit the larger society (including, in some cases, precisely the research subjects themselves, as research may uncover new cures, etc.), research codes typically emphasize the importance of minimizing risks to research subjects. Deontologists counter, however, that ‘the greatest good for the greatest number’ can -as historical examples such as the Tuskegee Institute study unfortunately illustrate—justify extreme suffering and even the deaths of ‘the few’, i.e., a relatively limited number of human beings now treated precisely as subjects , i.e., no longer as autonomous human beings. In addition to these two large poles, contemporary ethical approaches further include, for example, feminist and communitarian approaches that emphasize (as complements to, not opposites of, the strictly rational principles of deontology and consequentialism) the ethical importance of personal relationships and care between researchers and those engaged as ‘subjects’. In doing so, these ethical approaches come closer to utilizing forms of ‘the Golden Rule’—i.e., asking researchers to consider how they themselves would feel if they found themselves treated in the ways they proposed to treat their subjects? Moreover, these approaches characteristically expand the ethical focus from the research subject as autonomous individual to his/her circle of close relationships, so that the researcher may be obliged, as in the NESH (2002) guidelines, for example, to protect the anonymity and confidentiality of not simply a given subject, but also those of their close friends and intimate partner(s): see Johns et al. ( 2004 ). Our responses to specific ethical issues in research can thus be shaded in significantly different ways, depending on which of these frameworks we take as primary (cf. AoIR 2002 ; Ess 2003 ).

More specifically, contrary to the 1990s arguments against applying human subjects protection models, such models prevail both in contemporary discussions of IRE and the three extant ethical guidelines intended to address a large range of ethical issues in online research (i.e., AoIR 2002 ; NESH 2003 ; Kraut et al. 2004 ). Rooted in both national and international declarations of human rights (Reidenberg 2000 ; Michelfelder 2001 ), these models stress protecting the integrity and dignity of human persons first of all through an emphasis on rights to informed consent and to privacy as protected by guarantees of confidentiality and anonymity. The right to privacy, moreover, is reinforced especially in the philosophical discussions of information ethics—e.g., as such privacy is seen as instrumental to the personal development of the human being as a free and rational being, and as a participant in a democratic society (Johnson 2001 ; Bizer 2003 ).

In addition to this strong focus on human subjects protections (as drawn primarily from medical and social science approaches), contemporary IRE may also take up copyright issues (as reflecting more humanistic approaches that stress the producer of a text as an author rather than as a ‘subject’). Especially given that in the US context, anything appearing on the Web is immediately considered protected by copyright—researchers who take this approach to, say, studying websites, USENET postings, etc.,—will have a second set of ethical issues to consider, including what counts as ‘fair use’ of such texts, acknowledging copyright holders (not always obvious), and, in some cases, acquiring permission for direct citations. Especially this last requirement, when it emerges, confronts researchers with a set of both rights (i.e., authorship as protected by copyright, etc.) and costs to consider (e.g., the time and labour required to track down ostensible authors, to certify that they are indeed the authors and thus copyright-holders of a specific text, to acquire consent in ways that overcome the possibility, heightened in the online context, of ensuring that the consent comes from the proper author, etc.)

These emphases on the rights of participants must be considered further alongside other important rights and values—including (deontological) emphases on the importance of knowledge developed through research, and (more utilitarian) emphases on research knowledge as contributing to public policy and debate, along with researchers' rights and interests in pursuing knowledge, in enjoying free expression of their views, etc.

A large matrix thus emerges (see Table 31.1 )—one made up of possible but contrasting ethical approaches such as deontology, consequentialism, virtue ethics, etc., coupled to large ranges of recognized ethical issues shaped by whether we regard the persons implicated in our online research primarily as participants (thus calling into play the ethical codes primarily characteristic of medical and social sciences) or authors (thereby calling into play humanities approaches and issues of copyright, etc.). Within this matrix, researchers may begin by considering first of all whether online research is indeed preferable to offline research, precisely for ethical reasons. For example—and beginning from a consequentialist perspective—offline research may offer certain ethically relevant advantages, including potentially greater security for confidential data stored in physical rather than electronic formats. At the same time, however, research online—including web-based experiments, surveys, etc.—offers a distinctive set of advantages and potential benefits (see Chapters 24, 26, 28 and 30, this volume). Online researchers, for example, can much more easily acquire responses from those in remote areas, those whose disabilities might prevent them from physically travelling to a university campus or research centre, etc. To do so, moreover, researchers in some cases may make use of online surveys as well as automated programs (including data-gathering robots or ‘bots’), for example, that can track web use (including through the use of cookies)—thereby developing data sets on dramatically new and potentially very significant scales. In turn, these potential advantages must be further weighed against the distinctive costs and risks of online research, including: greater risks to individual privacy and confidentiality (because of greater accessibility of information online regarding individuals, groups, and their communications—and in ways that may prevent subjects from knowing that their behaviours and communications are being observed and recorded); greater challenges to researchers because of greater difficulty in obtaining informed consent; and greater difficulty of ascertaining subjects' identity because of use of pseudonyms, multiple online identities, etc. As well, the diversity of research venues (email, chat rooms, web pages), various forms of synchronous communication (such as Instant Messaging, IRC, audio-and video-chat, and so forth) present a wide range of distinctive ethical challenges—all of which is further complicated in international collaborations that thereby involve both subjects and researchers from countries with contrasting, if not conflicting, ethical and legal requirements, for example regarding privacy (cf. AoIR 2002 ). Finally, the use of cookies, bots, various forms of data mining, etc., while simplifying the researcher's work in many ways as they simultaneously expand the potential scale and scope of research, thereby introduce distinctive ethical issues of their own (cf. Allen et al. 2006 ). Even from a strictly consequentialist perspective, sorting out these complex ranges of the potential benefits and costs of online vis-à-vis offline research, is not always an easy matter (cf. Reips 1997, 2000 , 2002 ).

NB: this table is intended to serve both as an initial orientation, in the form of a conceptual map, and as a summary of some of the main ethical considerations raised in this chapter. It does not intend to imply reductionism of any sort—nor simple either/or's (e.g., between the poster as author vis-à-vis participant as subject: rather, these distinctions—as the arrows seek to show—are intended as points along lines of continua.

Human subjects protections online? Informed consent, privacy, confidentiality, anonymity

Given that researchers choose to undertake online rather than offline research—those undertaking primarily social science approaches must then consider carefully how to apply human subjects protections online. Informed consent, for example, is notoriously difficult to obtain in such venues as a large chat room, in which participants—using pseudonyms—come and go with breathtaking speed. In some specific contexts, however, there appears to be little ethical difficulty: consistent with the AoIR guidelines ( 2002 ), the most recent guidelines in psychology argue that there in what are analogized as public spaces such as large chat rooms, especially if users are informed from the outset that their communication is not confidential, and if researchers record these communications in ways that protect the anonymity (and thus privacy) of individuals, there is no need for informed consent (Kraut et al. 2004 ; cf. Cousineau et al. 2005 ).

Informed consent becomes imperative, however, with regard to research and observation involving more clearly private communications and personal information. In the European Union states, in fact, data privacy protection laws define personal information 4 and insist that data subjects must: unambiguously give consent for personal information to be gathered online; be given notice as to why data is being collected about them; be able to correct erroneous data; be able to opt-out of data collection; and be protected from having their data transferred to countries with less stringent privacy protections (European Union 1995 ).

In between these two relatively clear poles, of course, are the multiple grey areas in which the fine details of context, as well as the larger frameworks of disciplinary ethics, national laws (if any), and national and cultural traditions of ethical decision-making shape both what participants and researchers see as ethical issues and difficulties and the judgements ultimately made in the face of those difficulties. 5 For example, what if the chat room you're observing is relatively small and stable, so that participants develop a sense of one another's identities and personalities? What if the chat room, moreover, is populated by persons primarily from a smaller community (or, for that matter, country)—so that the chances are quite good that one or more of the participants know one another offline as well as online? And what if the chat room is devoted to sensitive issues—e.g., the exploration of lesbian sexuality? As Janne Bromseth has carefully explored, a researcher's ethical obligations to protect the identity and privacy of participants under these sorts of circumstances vary across a continuum of contexts, including cultural ones: Norway, as we will see more fully below, enjoys a higher expectation of privacy and privacy protection than even the EU countries, much less the US (2002). Multiple other examples could be adduced here (e.g., Danet 2002 ), but the point is that ethical judgements must attend to just such a complex range of contextual details and frameworks—and they will vary in part from country to country.

Specific issues in privacy

As noted above, different Western countries take different views regarding how far the right to privacy is to be protected. In the US and the UK, extant codes and guidelines make clear that such rights are not absolute, in the sense that they may be overridden if it can be demonstrated that (a) the risks to the subjects in such cases are minimal rather than maximal (as might be the case, for example, if one were to reveal a subject's identity who was infected with HIV) and that (b) such minimal risks are outweighed by the promise of greater good for the greater number as the hoped-for benefit of the research (Office for Protection from Research Risks 1991 ; Social Research Association 2002 ). By contrast, the NESH guidelines, for example, emphasize not the utilitarian benefit of scientific research, but its intrinsic good (2001: A.1), but even this stronger ethical status does not, in their view, justify overriding rights to privacy. On the contrary, such rights are, if anything, even more extensively protected—especially in the sense that not only are the individual's rights to privacy, confidentiality, etc., to be protected, but also those of their close relations (NESH 2001 : para. 40; cf. Bromseth 2002 : 36). 6

Relatedly, a major issue in IRE raises the question, ‘when does the private become public’. To begin with, web pages and archives ‘publicly’ posted on the Web are considered under US law to be public documents and ‘automatically’ copyrighted by the author. But the line between public and private can quickly blur here—for example, as a USENET poster originally submits a message in a forum believed to be private, only to discover years later that the entire USENET archive has been made publicly available online.

Other threats to privacy online are more intrinsic to the media. Even experienced and conscientious researchers, for example, can make a significant blunder when they write up their research: even if they seek to protect privacy by ensuring the anonymity of their research subjects—if they nonetheless include a direct quote from an archive that is publicly available and thus easily found through a search engine such as Google, they thereby make it trivially easy for anyone to determine the author's identity (cf. Eysenbach and Till 2001 ; Bromseth 2002 : 44). Moreover, Reips points out the further problems of researchers who make participant data available online. In keeping with Peden and Flashinski's observations (above), researchers may make no effort to protect the identity of participants in data files: but when these files are made available online—in contrast, that is, with being stored on a secure server with restricted access—such data then become available not simply to other interested researchers (which already violates basic protections of confidentiality and anonymity), but also, indeed, to anyone who happens to stumble across such files on the Web. In order to protect confidentiality, Reips adds, not only obvious personal identifiers (name, age, address, etc.) but also other information such as web links, IP addresses, etc. should be treated carefully as well, insofar as such information may also be used to trace the identities of research participants (Reips 2002 ).

Indeed, sophisticated users have at their fingertips a range of technologies, from automated analysis software to programs for ‘trapping’ Internet transmissions in their entirety, that seem to make online privacy an oxymoron (Hunsinger 2003 ). In light of the difficulty of establishing and sustaining privacy online, it may well be asked whether or not there is any meaningful ethical obligation to do so? Responses here again vary by country and culture. Roughly, US-based researchers—consistent with the greater willingness in US-based codes and laws to accept at least minimum risks to subjects—seem more comfortable with reduced or eliminated obligations to protect subjects' rights to privacy and confidentiality. By contrast, European researchers—consistent with the shared assumption that the state exists in part precisely to protect basic rights through law, as well as with the generally stronger data privacy protection laws already in place—are more likely to see law and its enforcement as a primary means of articulating and protecting such rights.

As a general, international guideline: in light of this greater difficulty to protect privacy, confidentiality and anonymity online, it is safest to not only anonymize subjects but also to paraphrase any citations or quotes. As we will see in greater detail below, however, in some forms of research such as discourse analysis and ethnography, direct quotes—and, perhaps, the ‘real’ pseudonyms of their authors—are necessary to support or illustrate a claim. There is some agreement that when such direct quotes and real pseudonyms are used, informed consent is de facto necessary (e.g., Lawson 2004 ). At the same time, however, in the US context, an Institutional Review Board might waive the requirement for informed consent in such a case, but only if it could be demonstrated that risks posed to the author(s), should their identity become known, would be minimal.

Beyond this first guideline—an additional consideration for researchers is whether or not they will choose to meet what may be considered the ethical minimum , i.e., what is explicitly required by extant professional codes, relevant laws, etc., and/or whether they may choose to pursue a more stringent ethical standard that is above and beyond such minimal requirements. The choice for the latter can be referred to as ‘Good Samaritan ethics,’ following Judith Jarvis Thomson's development of this distinction in her discussion of abortion ( 1971 ). That is, as we will see more fully below, researchers will often decide to protect privacy in stronger ways, to ask for informed consent when perhaps not entirely necessary, etc.— despite the greater costs and complications of doing so—as these ethical choices follow from their own personal ethical framework. In contrast with the minimal ethical requirements that are incumbent upon all researchers (especially from utilitarian considerations that allow for at least minimal risk to subjects as justified by research benefits for the many) such ‘Good Samaritan’ choices are by definition exceptional and exemplary (and often rooted in more deontological recognitions of the absolute importance of basic rights, respect for subjects as persons, etc. -even if recognizing these in the praxis of a specific research design entails greater costs). While such choices are possible options for researchers to consider in the face of pressing ethical dilemmas, such ‘Good Samaritan’ choices are not compelling in the same ways as the more common, shared, but comparatively minimal ethical requirements incumbent upon all researchers as professionals in a given discipline, as citizens in a given country, etc. Nonetheless, researchers may find it helpful to review their own ethical dilemmas in part in terms of whether their dilemma represents just such a contrast between the requirements of professional ethics and law, on the one hand, and, as a number of researchers eloquently articulate, their own personal but more demanding ethical frameworks.

Risk to participants

Researchers are thus minimally obligated to attend to the ethical codes of their own disciplines and the state and national legal requirements of their citizenship. While countries vary, as we have seen, regarding their stress on deontological vis-à-vis consequentialist approaches—since consequentialist approaches are widely taken up (e.g., in the US and the UK and, to some extent, Germany), it is further critical to consider with some care the risks that human beings face as they participate in online research.

Chris Mann ( 2003 ) has helpfully detailed the distinctive risks of online research. Her list includes technical risks such as lack of security—because of crashes, poor network set-up, buggy software, sloppy password selection and use, viruses, hackers, etc.—and lack of privacy, and legal risks— primarily in the form of people failing to understand the prevailing legal requirements, including copyright laws and data protection laws. In particular, she notes that ‘the lack of clarity about which legal systems apply in cross-cultural research means it is difficult to know which laws will apply’ (2003: 43). Moreover, her list of participants' personal risks includes: lack of protection from harassment, abuse and deception; lack of debriefing possibilities; lack of protection from exposure (i.e., violation of privacy, confidentiality, anonymity—leading to harm to reputation and self-esteem); lack of knowledge about the potential for exposure— first of all, as ‘Newcomers are not always aware of [the] public nature [of online venues]’ (2003: 43); and, finally, lack of protection for the most vulnerable , i.e., children and adolescents, the elderly or institutionalized, those with learning disabilities—and, perhaps most risky of all, people with ‘serious psychiatric conditions’ such as depression or panic attacks (2003: 43f.).

Arguably, many of these risks are greater in online research than offline. For example, because of the lack of direct physical contact between researchers and participants, some forms of deception online are easier to carry out. And as the early example of the male psychologist masquerading as a female illustrates, such deception may be experienced as great harm indeed (Van Gelder [ 1985 ] 1991 ). Similarly, especially as technologies for capturing others' information continue to advance (Hunsinger 2003 ), risks to privacy online—and thus the attendant risks of damage to self-esteem, reputation, private life (and, as the NESH guidelines remind us, close relations) likewise seem greater in online environments than in physical environments where research documents may be strongly safeguarded.

By the same token, newcomers—as those most naive about online environments, their technological construction, and attendant risks—often simply do not know enough to know what risks they thus face. This vulnerability, finally, is only amplified among the groups Mann describes—generally, those whose experiential and/or cognitive limitations render them even more open to inadvertent or intentional exploitation.

This last set of risks, in fact, are not merely theoretical. Rather, risks to adolescents—and the concomitant ethical difficulties confronting researchers—are now well-documented and discussed (e.g., Reips 1999 ; Stern 2003 ; Bober 2004 ; Löfberg 2004). While discussion of this particular dimension of IRE is only at its early stages, there is quickly emerging here a consensus that, indeed, researchers have a greater responsibility to protect such participants from harm—including potential harms, for example, that may befall an adolescent girl who naively posts her home address and the times her parents will be away (Ridderstrøm 2003 ). Similarly, Susannah Stern argues, based on her own encounters with home pages revealing low self-esteem and suicide fantasies—followed by the real-world suicide of one of the authors of such a home page—that researchers should take such discussions very seriously and consider intervening, if possible, even at the cost of tainting or rendering their research unusable (Stern 2004 , 2005 ). Stern's position may be seen as still another example of Good Samaritan ethics rather than as a requirement for all researchers: in any case, it is an option to be considered seriously.

Whether or not such risks are greater in online research than more everyday risks—such as those faced by every user of CMC (e.g., by having their consumer preferences mined though the use of cookies during frequent visits to a website), or those facing participants in physical research settings—is a critical consideration. That is, researchers will have to assess such risks, and then make their ethical judgements depending on three further issues. One, ethicists—as well as national laws—generally agree that our duties to protect others increase in relation to their vulnerability: the greater the vulnerability—e.g., of a child—the greater our obligation to protect a person from harm. Especially if it seems that vulnerability to such risk of harm is greater in online research environments, then it would appear that researchers have a correspondingly greater obligation to protect their research participants. Two, as we have seen, countries vary in terms of taking more deontological or consequentialist approaches to research ethics. Researchers—and their collaborators—from more consequentialist countries will have to consider whether these potentially greater risks to participants can be overcome, first of all as risks to participants must be offset by greater benefits promised by research. Moreover, given that this claim of greater benefit can be made, even in the consequentialist countries relevant codes require that risks to subjects be minimized . Judgements will have to be made as to whether the research design can indeed minimize such risks—and at a cost that in turn can be justified by potential research benefits. Researchers—and their collaborators—in more deontologically oriented countries will recognize in the possibility of greater risk to participants in online research a greater burden of proof: their research design will have to strongly protect their participants against such risks. Finally, if research involves collaboration between colleagues in (more) consequentialist and (more) deontological countries (and corresponding legal traditions), these collaborators will likely need to meet the more stringent requirements of their deontological colleagues—for example, as they would be required to do so by EU data privacy protection laws that would prevent researchers from sharing personal information data with colleagues in countries with less strict data privacy protection, such as the US.

Meta-ethical issues

‘Meta-ethical’ refers here to those issues, concepts, assumptions, etc., that are otherwise tacitly assumed ‘underneath’ more straightforward ethical discussion and debate regarding specific ethical conflicts and problems. We have already reviewed two of these—(1) Offline vis-à-vis online worlds— how ‘real’ is the virtual, and thus how far do offline extent codes and guidelines apply to online research? And (2): given that much of Internet research is interdisciplinary—how do we deal with sometimes serious differences between ethical codes of the specific disciplines involved, beginning, as we have seen, with the considerable differences between social science approaches that follow medical models of human subjects protections and humanities disciplines that may treat posters, for example, as authors (e.g., White 2002 )? 7

Methodologies and ethics

The issue of interdisciplinary approaches points to a further meta-ethical issue—that is, how research ethics is intimately interwoven with the specific methodology/ies used in a given project.

As a first example, consider online experiments that, like their offline counterparts, frequently offer incentives to attract and retain participants. Obviously, providing rewards such as a lottery prize, credit (for students), or money, requires the researcher to know the identity and important personal information of his or her participants. This requirement for identity, as we have seen, is complicated in the online environment first of all because it may be difficult, if not impossible for a researcher to confirm or correct the real-world details of a participant's identity whom s/he never meets face-to-face. Moreover, if the design of the experiment requires that participants remain anonymous—how is the researcher to both maintain the anonymity of participants and their individual identity for the sake of providing them promised incentives (cf. Peden and Flashinski 2004 : 2)? More broadly, Danielle Lawson points out that participants ‘may hesitate to chat simply for the sake of “research purposes”’ such as an Internet-based experiment ( 2004 : 92): indeed, she notes that Elizabeth Reid discovered that participants who were made aware of her research intentions through the informed consent process consciously crafted their textual production in hopes of getting quoted—leading Reid to argue that non-disclosure may be both necessary and justified (Reid 1996 : 171, cited in Lawson 2004 : 92).

Lawson identifies additional ethical problems associated with specific methodological approaches. On the one hand, researchers may undertake more objectivist methodologies that emphasize classical scientific norms such as replicatability. Such methodologies thus require publication of participant characteristics such as gender, age, etc.—but such publication can run the risk of violating participant confidentiality and anonymity, especially if additional information is published, such as verbatim quotes that may be subsequently traced (as available in a publicly accessible archive, etc.). Moreover, as researchers adopt methodologies that emphasize, for example, Geertz's ‘thick description’ and/or, as we shall see in more detail shortly, participant-observation approaches, the resulting need for publishing more details regarding research participants and their interactions thereby increases the threat to their anonymity and confidentiality (Lawson 2004 : 91).

In response to these tensions, Lawson offers a range of possible options that researchers can offer to participants:

consent to having their nickname and communicative text used for data analysis only (no publication of name or text);

consent to having either their nickname or text published in an academic work, but never together (i.e., no identifiers);

consent to having either their nickname or text published in an academic work, but never together (i.e., no identifiers) and providing they get to see the ‘write up’ prior to publication;

consent to having both their nickname and text published in academic work, thereby being credited as the authors of their own words; or

consent to having both their nickname and text published in academic work, thereby being credited as the authors of their own words, providing they get to see the ‘write up’ prior to publication.

The last two options deal directly with the issue of CMC copyright (Lawson 2004 : 93). But as Lawson notes, giving participants the option of final approval of a proposed publication has been criticized by researchers such as Lynn Cherny ( 1999 ): in particular, Susan Herring objects that critical theorizing will be hampered if participants have, in effect, veto power over the final research publication (1996, cited in Lawson 2004 : 94). In response to these sometimes intractable tensions, Lawson concludes that ‘Thus, it is up to the researcher to determine how much influence participants' criticisms will have over the final product’ (2004: 94). In ethical terms, this means that researchers, in the end, will have to make difficult judgements regarding the tension between protecting anonymity, gaining informed consent, etc., and the scientific requirements of their particular methodology.

Participant observation and discourse analysis

Virtual ethnography and its ethical challenges have received considerable attention in IRE. Katherine M. Clegg Smith, for example, examines some of the central ethical challenges in virtual ethnography vis-à-vis her own research on ‘ListX’, beginning with whether or not a researcher ‘lurking’ (i.e., unannounced and unidentified) in a listserv is more akin to a researcher taking notes on a public bench vs. doing so while hiding in a bush? (2004: 230. See also Chapter 26, this volume.) Clegg Smith argues that her participant observation approach—at least in relation to a public list whose introductory message to new members emphasizes that the list is public and all messages are archived—meant that she was not required to announce her ‘listening’ to postings; nor did she request informed consent (2004: 231–235). Finally, in wanting to include text as data in her research publication, Clegg Smith thus wrestled with whether to treat posters of text as subjects whose anonymity and confidentiality must be protected, and/or as authors who would want credit for their work -choosing, in the end, to keep them anonymous (2004: 230–235; see also Svenningson 2001 ; Bromseth 2002 ; Markham 2004 ).

As a further instance: as Nadia Olivero and Peter Lunt argue, methodologies of participant observation and discourse analysis in online environments heighten the importance of privacy, informed consent, and ethical issues surrounding the use of participants' texts (2004: 102). Their review of CMC research literature supports their contention that ‘reduced social context cues and technological-induced anonymity can increase self-awareness’ (2004:104; my emphasis)—as can the asynchronous medium of email. This and other considerations lead Olivero and Lunt to endorse an egalitarian relationship between researchers and their informants—considerations reinforced, finally, by the distinctive characteristics of the email venue: because the interviewee can ‘disconnect’ from email contact with the interviewer at any time—it is even more important in this venue to foster the active and engaged involvement of the interviewee by offering significant reward in the form of ‘the gratifying trusted, reciprocal exchange indicated by the feminist perspective’ (2004: 107). In somewhat similar ways, but with reference on online support groups, Mary Walstrom ( 2004 ) develops a feminist, communitarian ethic in conjunction with participant-observation and discourse analysis research, specifically by way of appeal to Bakhtin—as have G. John Hall, Douglas Frederick, and Mark D. Johns ( 2004 ).

As we have seen, Judith Jarvis Thomson introduces the distinction between minimal ethical requirements and those actions and choices—such as those of the Good Samaritan—that are admirable precisely because they go beyond our everyday expectations and codes. But this further means for Thomson that while such actions and choices are exemplary—they cannot, however, be required of everyone in every circumstance, e.g., by code or law (1971). Here we can note that such ethical Good Samaritanism seems to emerge frequently among researchers undertaking participant-observation methodology. A number of such researchers have recognized that the usual professional ethical and legal requirements—e.g., as not obliging a researcher to protect the privacy and identity of participants in a listserv as a public space—did not meet up to their own ethical standards. Rather, these researchers—as more directly engaged with their participants and thus more directly empathic with the possible harms that loss of privacy might entail—have chosen to take a more stringent ethical stance, for example, by insisting on protecting privacy even though such protection complicated their research, made greater demands on their time and resources, etc. (see King 1996 ; Reid 1996 ; Smith 2004 ). Such ethical Good Samaritanism may be fostered as well among researchers, such as Walstrom ( 2004 ) and Hall, Frederick and Johns who, as we have seen, are committed to a feminist communitarian ethics (drawn from Denzin 1997 ) that emphasizes the central importance of sustaining the web of personal relationships that emerge in the research project (2004: 247–252). (For further discussion of the correlation between distinctive research approaches and their correlative ethical difficulties, see Bakardjieva und Feenberg [ 2001 ]; Markham [ 2003 ].)

A global Internet research ethics?

A further meta-ethical issue is raised by the global reach of the Internet: in light of often significant national differences such as we've already seen in Western nations between those stressing more deontological and more consequentialist approaches—how might we develop a research ethics that is legitimate for researchers and participants from more than one nation?

Projects such as the AoIR ethical guidelines and the RESPECT project suggest that researchers from a diversity of countries and traditions of ethical decision-making can in fact agree upon a range of basic values and issues—and at the same time preserve local differences in the interpretation and implementation of those values through a strategy of ethical pluralism . 8 In fact, while discussion of Internet research ethics is very young in Asia, at least three examples drawn from contemporary praxis articulate strong ethical pluralisms between Western and Eastern approaches. For example, Japanese researcher Tamura Takanori, in a recent study of messages exchanged in a forum, chose what he described as a ‘more cautious way’—one that included: asking for consent to use forum exchanges from the forum coordinator; using pseudonyms when referring to specific authors; and using paraphrases, rather than direct quotes (Tamura 2004 ). To be sure, there are clear and striking differences between Western and Japanese understandings of privacy (see Ess 2005 ; Nakada and Tamura 2005 ). Nonetheless, Mr Tamura's approach here is strikingly consistent with several elements of Western IRE. To begin with, Tamura notes that with regard to web pages, for example, even though they are public documents, their authors often express the desire that they be notified of any links to their pages. By analogy, Tamura's approach to protecting the privacy of the forum participants shows a basic respect for the expectations of their authors—a respect that is a cornerstone for especially Western deontological ethics (AoIR 2002 : footnote 7). Such expectations are also important for an approach rooted in a Western feminist ethics, specifically an ‘ethics of care’. In addition, Tamura's ‘more cautious way’ (one that in particular contrasts with the less protective approach adopted by other researchers) resonates with a Good Samaritan ethic that, as we have seen, goes beyond the minimal requirements of prevailing law and practices. Finally, Tamura's more cautious way is strikingly consistent with Western (again, deontological ) approaches that emphasize the rights of the subject, including protection against possible harm, above possible benefits of research.

This example thus articulates an ethical pluralism as a structure of shared norms held alongside the irreducible differences that define distinctive cultures. Similar examples can be described with regard to notions of self-regulation in China and some Western countries, and with regard to the central ethical concept of privacy, alongside emerging data privacy protection laws (Ess 2005 , forthcoming ). While not all cultural differences in research ethics will be resolvable through such pluralisms—nonetheless, these examples suggest that a global IRE may possibly emerge as information ethics and research ethics traditions in both East and West become ever more developed.

Internet research ethics promises to become an ever more robust and significant field within information ethics, on the one hand, and research ethics more broadly, on the other. Especially as new venues emerge for human—human and human—machine interaction (including interaction with increasingly sophisticated programs that may eventually approximate human sentience—and thus, many would argue, would deserve some modicum of ethical respect), it seems certain that new ethical conundrums will emerge. But as I hope is clear in the above, the overall history of Internet research ethics includes at least some convergence on key values and rights, while at the same time preserving important local differences with regard to approaches to ethical decision-making and implementation of basic rights and principles—even across East-West divides. This trajectory suggests not the certainty of finding resolutions to every ethical problem that comes along—but rather the sense of finding such resolutions in the face of new difficulties with sufficient frequency and success as to encourage our further efforts to do so.

Acknowledgements

I wish to express my deep gratitude to more people than I can name—including the members of the AoIR ethics working group and the numerous presenters and participants in AoIR panels and workshops on Internet Research Ethics whose insights and ethical sensibilities are reflected in this chapter. I am especially grateful to Elizabeth Buchanan, Ulf-Dietrich Reips, and two anonymous reviewers whose insightful criticisms and suggestions helped significantly improve this chapter.

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These basic rights include familiar rights to informed consent, anonymity, privacy, and protection of confidentiality, as well as the requirement that researchers minimize the risk of harm to research subjects. These requirements have been developed since the Nuremberg Code (1947) through the Belmont Report (1972) to the US Code of Federal Regulations to the Office for Protection from Research Risks ( 1991 ). The most important international declaration of these rights is the World Medical Association Declaration of Helsinki ( 2004 ).

Such boards are required by the Federal codes in the United States (cf. Walther 2002 ) and are a part of every college and university that undertakes research involving human subjects. They certainly have their counterparts in the English-speaking world—such as the ‘Research Ethics Boards’ (National Research Council, Canada), external Learning and Teaching Support Networks' subject centres and internal Academic Standards and Policy committees in the UK, the National Health and Medical Research Council (Australia) and the Australian Research Council. By contrast, such oversight authorities are absent, for example, in Danish universities. See also Johns et al. ( 2004 ).

As one example from 1994: ‘If the research does not involve identifiable subjects, there is no risk to subjects, and therefore the protection of these rights and interests no longer applies’ (Jones 1994 : 33, cited in Lawson 2004 : 84). More recently, Dzeyk, for example, flatly states that ‘Denn es ist kaum vorstellbar, dass bei netzbasierten humanexperimentellen Untersuchungen Versuchspersonen z. B. in Lebensangst versetzt werden könnten’ [It is scarcely imaginable that experimental subjects could experience any anxiety about their lives in net-based experimental research] -in order to argue that deontological codes (e.g., those that emphasize motives, ethical principles, etc. without regard for consequences) hence do not apply to online research (Dzeyk 2001 : 5). As we are about to see, however, the possibility of online research resulting in serious harm to human subjects started to become apparent as early as 1985.

Article 2 (a) of the Directive states:

‘personal data’ shall mean any information relating to an identified or identifiable natural person (‘data subject’); an identifiable person is one who can be identified, directly or indirectly, in particular by reference to an identification number or to one or more factors specific to his physical, physiological, mental, economic, cultural or social identity.

At least since Confucius and Aristotle, philosophers in both Eastern and Western cultures have recognized that ethical judgment is not a matter of developing general principles that can then be applied algorithmically to specific issues. Rather, a central reason for why ethical reflection and discussion are both so complex and so necessary is just that judgement is involved—where such judgement must decide, for example, which general principles may indeed apply to a specific case and context. Aristotle refers to this form of ethical judgement as phronesis , and argues that it—along with ethics and political philosophy more generally—require years of experience in the effort to apply ethical norms in praxis , as well as of theoretical reflection on both the apparent successes and failures of such effort, in order to be shaped and ‘taught’ (e.g., Nichomachean Ethics 1968, 9 [1094b29–1095a12], 337 [1140a32–1140b7]. His teacher, Plato, used the example of the ship's pilot—the cybernetes (from which, in fact, ‘cybernetics’ derives)—as the model of the ethical person ( Republic [1968] 1991, 9 [Book I, 332e], 169 [VI, 489c]. More recently, to paraphrase Simone de Beauvoir—ethics is not a matter of general rules and recipes; it is more like the arts, in which one can focus on methods (1948:134).

As we have seen, Dzeyk notes the distinction between deontological and utilitarian positions, and argues that only utilitarian positions are relevant for online research ethics (2001: 5, cf. note 4). But his own position in fact reflects a mixture of deontological and utilitarian considerations. For example, he recommends first of all attention to protection of private information as required by the German data privacy law [ Bundesdatenschutzgesetz ] — and further notes that this privacy protection derives from the right to ‘informational self-determination’ [ informationelle Selbstbestimmung ] (13f.). He seems to assume that these basic rights are not to be overridden by any possible benefits of research. As such, the affirmation of such basic rights over any consequentialist considerations of possible research benefit counts as a deontological commitment, not a consequentialist one.

As a second example, Dzeyk further recommends Döring's approach: ‘Döring empfiehlt beispielsweise ein kontextspezifisches Vorgehen: Ein expliziter Wunsch nach Privatheit sollte in jedem Fall beachtet werden; dies spielt insbesondere bei sensiblen Themen (wie z. B. Missbrauch) eine große Rolle (vgl. Döring, 1999 : S. 204)’. That is, any explicit wishes for privacy are to be respected in every case—most especially in connection with sensitive issues such as abuse. But it is precisely this respect for explicit wishes -more broadly, expectations— that I would further count as deontological, not consequentialist. Insofar as Dzeyk's position may be representative of German approaches to research ethics, then it would be fairly characterized as one that blends both deontological and consequentialist approaches—and thereby, as something of a middle between more consequentialist approaches in the US and the UK and more deontological approaches in Norway, for example.

A specific example of this conflict is provided by Bassett and OʼRiordan ( 2002 ) who describe their careful efforts (following the social science guidelines for protecting privacy, etc.) to disguise participants and even the name of a forum dedicated to topics of lesbian sexuality—only to be roundly chastised by the forum owners: such anonymization, etc., in their view only colluded with the larger social marginalization of lesbians and lesbian sexuality, and thus seemed a violation of their rights and expectations, not, as intended, the protection and fulfillment thereof.

See especially AoIR (2002: 4), including footnotes 6 and 7, as well as Addendum 2. In addition, I have argued for such a pluralism at work in emerging conceptions of privacy and data privacy protection in China and Hong Kong: see Ess ( 2005 , 2006 ).

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Handbuch Soziale Praktiken und Digitale Alltagswelten pp 375–383 Cite as

Ethics in Digital Research

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This chapter provides a broad overview of the technological landscape of today’s Internet and considers the ways in which Internet research, as an umbrella term, has morphed and changed into today’s big data infrastructure. It furthermore discusses the implications of these changes for ethical decision-making and conduct of research. The guiding anticipatory ethics approach of the Association of Internet Researchers is used as an ethical frame.

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Ethical issues in using the internet to engage participants in family and child research: A scoping review

Stacey hokke.

1 Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia

Naomi J. Hackworth

2 Murdoch Children’s Research Institute, Melbourne, Victoria, Australia

3 Parenting Research Centre, Melbourne, Victoria, Australia

Shannon K. Bennetts

Hnin yee win, jan m. nicholson.

4 Queensland University of Technology, Brisbane, Queensland, Australia

Lawrie Zion

5 Department of Communications and Media, La Trobe University, Melbourne, Victoria, Australia

Jayne Lucke

6 Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Victoria, Australia

7 School of Public Health, The University of Queensland, Brisbane, Queensland, Australia

Patrick Keyzer

8 La Trobe Law School, La Trobe University, Melbourne, Victoria, Australia

Sharinne B. Crawford

Associated data.

All relevant data are within the manuscript and its Supporting Information files.

The internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.

Academic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.

Sixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children’s vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.

Conclusions

Engaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.

Introduction

Parents and children in contemporary society are facing new and multiple demands that may affect their wellbeing, and limit parents’ capacity to support their child’s healthy development [ 1 ]. High quality research is key to understanding these changes and to providing a sound evidence base for the development of policies and programs to support families, parents and children. Being able to engage families from diverse backgrounds and in sufficient numbers is critical to the completion, scientific validity and financial viability of such research [ 2 ]. However, a major research challenge is the ability to attract and retain participants over time to assess long-term outcomes [ 3 ], particularly within the context of increasing family time pressure and population mobility.

Engaging participants in research can involve: recruitment (strategies to invite potential participants and enrol them into research); retention (strategies to ensure ongoing participant involvement to reduce attrition); and tracing (strategies to find and re-connect with participants who have been lost to follow-up). Conventional approaches to engage families and children in research (e.g., telephone calls, mail-outs, print media, face-to-face) are not only expensive and labour intensive [ 4 , 5 ], but are increasingly ineffective in the face of contemporary mobile populations and changing communication patterns [ 6 ]. For instance, the use of random digit dialling to recruit participants is less effective as many families now live in households without a fixed telephone [ 7 ]. Recruiting families via address-based sampling is also difficult in the context of increasing residential mobility, which is high among young and socially disadvantaged families (e.g., experiencing poverty, unemployment, relationship breakdown) [ 8 , 9 ] who are often the target of research. Maintaining contact with mobile families can be challenging in longitudinal research, especially if there are lengthy periods between data collection waves or if a prospective follow-up study was not part of the initial research design [ 10 ].

Increasingly, child and family researchers are using online methods to recruit, retain and trace participants [ 6 , 11 – 13 ]. In developed countries, internet access is almost universal among households with children, with most connecting online via mobile or smart phones [ 14 , 15 ]. Children and adolescents have among the highest rates of internet use and frequency of use compared to older age groups, and social media use is ubiquitous among adolescents [ 16 ]. Parents are also increasingly online [ 17 ]. More parents access Facebook on a daily basis than non-parents, with usage tending to increase during the transition to parenthood [ 18 , 19 ].

As a research tool, the internet provides alternative strategies to reach participants where they ‘live’, and presents an ostensibly efficient and cost-effective solution to the challenges associated with conventional methods of participant engagement [ 20 ]. For example, study invitations can be advertised on websites or circulated via email to a large audience quickly and at little expense. Advertisements on social networking sites such as Facebook can be specifically targeted to identify eligible participants based on their personal characteristics or interests. Evidence suggests that child and parent samples can be recruited more efficiently and at a lower cost online than offline, and may result in a sample that is representative of the target population, or which has similar representativeness to studies using offline recruitment methods [ 21 – 23 ]. The internet also has potential to reduce attrition and non-response bias in longitudinal research with children and parents [ 13 , 24 , 25 ]. Posting on study websites or directly messaging participants on social media can maintain contact with study cohorts and send calls-to-action at appropriate times (e.g., for measure completion), while internet search engines and the search features of social networking sites can be used to trace participants who have been lost to follow-up.

Given the ubiquity of the internet and smartphone technology, the public availability of online communities and the potential cost and time efficiencies, it is unsurprising that family and child researchers are increasingly harnessing the internet to engage participants. As with all new research methodologies however, consideration needs to be given to the ethical issues surrounding its use. It has been argued that maintaining privacy and anonymity and obtaining informed consent are more complex in online research than offline research [ 26 ]. As a relatively new research tool, engaging participants online may also present issues that may be novel or less apparent. For example, the internet, and particularly social media, introduce new ways to access data and personal information. This raises questions regarding the ethical appropriateness of accessing digital data or online profiles for research purposes, and how the ethical principles embodied in codes of conduct (e.g., [ 27 ]) are upheld.

Ethical issues may be particularly pertinent in online research with parents and children. Such research may be sensitive in nature and involve vulnerable populations. Communicating with and engaging minors in an online setting can present further challenges, such as how researchers accurately determine a child’s capacity to consent to participate and the process of obtaining parental consent. Within this context, it is imperative that researchers, ethics committees and institutional review boards are aware of the advantages, limitations and ethical challenges of recruiting, retaining or tracing participants online. While discourse on internet and social media research ethics in family and child research is emerging [ 4 , 28 ], this may not be empirically based. In addition, there is a lack of definitive national regulatory guidance on internet research ethics. To date, little research has systematically assessed the ethical issues encountered or considered by those using the internet to engage participants in child and family research. It is unclear what ethical issues are considered by researchers in this setting and whether these ethical concerns differ from those in offline research, or in research not involving children and parents. It is also unclear what ethical guidance family and child researchers follow when recruiting, retaining or tracing participants online.

To address these gaps, a scoping review was conducted. Scoping reviews aim to synthesise and narratively integrate evidence when there is a large and diverse body of literature that has not been comprehensively reviewed [ 29 ]. They aim to map the extent, range and nature of research, and identify key concepts and gaps in the literature to inform future work [ 29 , 30 ]. Scoping reviews differ from systematic reviews, in that they are often broader in focus, include a range of study designs and methodologies, and typically do not appraise study quality. They differ from narrative or literature reviews as they follow rigorous, systematic methods to identify literature and require analytical re-interpretation of evidence [ 30 ].

This review was conducted to gain an understanding of the ethical issues associated with the use of the internet to engage parents, children and families in research, and to identify available resources to support the ethical conduct of family and child researchers in the context of online research. The review aimed to assemble and summarise the ethical concerns and considerations reported in available literature and identify ethical issues unique to using the internet to recruit, retain and trace families and children in research. A systematic search of academic literature was conducted to answer the following research questions: (1) How is the internet used to recruit, retain and trace participants in child and family research?; (2) How are ethical and consent procedures reported?; and (3) What ethical concerns are identified? In addition, a general grey literature search was conducted to determine: (4) What ethical guidelines are available and being used to inform internet research?

A multi-disciplinary research team was established to undertake the review, with expertise in child and family research, public health, psychology, media and communications, and law. The scoping review was conducted according to a 5-stage framework [ 29 – 31 ]: (1) identifying the research questions; (2) identifying the search strategy; (3) study selection; (4) charting the data; and (5) collating, summarising and reporting the results. These steps were applied separately to searches of the academic and grey literatures.

Academic literature search

To address Research Questions 1 to 3 above, academic literature was searched using four categories of keywords: engagement strategy , internet , ethics and focus sample ( Table 1 ). Boolean search operators “AND” and “OR” were used to combine keywords between and within categories. Searches were conducted in the following electronic databases selected to ensure maximum coverage of family, child and internet research: Scopus, PsycINFO, Embase (includes Medline), ERIC, CINAHL and Informit. As the Scopus search generated over 70,000 initial hits, results were refined by applying additional search limits (see S1 File ).

Articles were eligible for inclusion if they were written in English, published between January 2006 and February 2016, and used the internet (e.g., social network sites, websites, email, listserv, blogs, forums, applications, online research participant registries) as a method for recruiting, retaining or tracing families, parents and/or children in research. Studies that used the internet for data collection but not participant engagement were excluded. Studies that used online residential listings were also excluded as these listings are typically used for compiling subsequent mail-out or door-knocking recruitment strategies. Included articles could be original research, reviews, discussion papers, outcomes papers, protocol papers or editorial letters. Books, book chapters and thesis dissertations were excluded. Published conference abstracts were used to search for subsequently published full-text articles, which were included if they met the inclusion criteria.

Upon completion of the search, duplicate articles were removed and search results were screened by title and abstract for eligibility. Articles passing the abstract screen were then retrieved in full-text and further screened for eligibility. Screening of abstracts and full-text articles was undertaken by a primary reviewer (NQ) and confirmed by a second reviewer (SH). Conflicts were resolved by consensus with a third and fourth researcher (NJH, SBC).

Articles were summarised, and characteristics were charted, including: author(s), year of publication, geographic location, article type, study participants, method(s) of participant engagement, type of internet technology used, study approval and consent procedures, ethical considerations and concerns, and authors’ use of ethical guidelines and resources. Methods of participant engagement were defined as follows: recruitment —strategies to initiate contact and invite potential participants; retention— strategies to maintain contact with participants in longitudinal research; and tracing —strategies to find and re-establish contact with participants in longitudinal research who have been lost to follow-up. Reference lists of full-text articles were searched and eligible articles charted. Each article was analysed by a primary reviewer (SH) and extracted data confirmed by a second and third reviewer (NJH, SBC). A narrative account of key findings is presented according to each ethical consideration identified.

Grey literature search

Ethical guidelines and recommendations produced by governments, research institutes or professional associations are documents classified as ‘grey literature’. This term refers to reports, theses, factsheets, websites, policy documents and other information produced by government, academics, business and industry in print and electronic formats. These documents are not controlled by commercial publishing [ 32 ], may not be peer-reviewed and most are not included in academic databases. Grey literature published online can be located through internet searches [ 33 ].

To address Research Question 4, an internet search was conducted to identify guidelines to support researchers’ and human ethics committees’ ethical conduct of internet research. A general internet search was performed with the popular web search engine Google ( www.google.com ) using the following search terms: (ethic*) AND (recommendation* OR guide*) AND (internet OR "social media" OR online) AND (research). The first 100 hits (as sorted for relevance by Google) were screened by title and text and potentially relevant results were viewed. Guidelines were included if they were published from January 2006 to February 2016 and focused on any internet research methods. Information about each resource was charted, including author(s), affiliated institution(s), year of publication, format and purpose, comprehensiveness regarding the research methods raised, and the ethical considerations and recommendations discussed, including ethical issues specific to family and child research.

Summary of search process and results

The search process and results are summarised in Fig 1 . Searching academic databases identified 3,794 abstracts, with 3,537 remaining following the removal of duplicates. Preliminary screening of abstracts identified 205 articles for full-text screening, of which 53 articles met the inclusion criteria. Hand searching reference lists identified 12 additional relevant articles, resulting in a total of 65 academic articles for inclusion in the scoping review (see S2 File ). Five professional guidelines and 10 university guidelines specific to internet research ethics were identified by Google search.

Academic literature article characteristics

The majority of identified academic articles were published after 2011 ( n = 47, 72%) and originated from the USA ( n = 24, 37%), UK ( n = 12, 18%), Australia ( n = 11, 17%) and the Netherlands ( n = 9, 14%). Most were original research ( n = 58, 89%), including four research protocols (6%) and 10 case studies (15%). The vast majority of original research papers reported using the internet to recruit research participants ( n = 51/58 articles; 88%). Using the internet to retain participants was reported in seven articles (12%; six also used the internet for recruitment) and to trace participants in six articles (10%). Four discussion papers (6%), two systematic reviews (3%) and one letter to the Editor were identified, and these primarily focused on participant recruitment. Overall, one third of the articles addressed or described specific ethical issues of engaging participants online ( n = 26/65, 40%). The remainder reported using the internet as a research tool but did not discuss ethics beyond reporting general consent or ethics approval procedures.

The participant samples for the original research articles were predominantly youths ( n = 20/58, 34%; typically ranging in age from 15–25 years) or adolescents ( n = 13/58, 22%; typically ranging in age from 11–18 years). Six studies used mixed samples of child/adolescent or adolescent/adult participants ( n = 6/58, 10%) and four longitudinal studies ( n = 4/58, 7%) traced children into adulthood. The participant samples for the remainder were parents ( n = 11/58, 19%) or families (e.g., parents and children; n = 4/58, 7%).

How is the internet used to recruit, retain and trace participants in child and family research?

Just over half of the research articles reported using a combination of offline and online methods to engage participants ( n = 32/58; 55%), with 45% ( n = 26/58) using online methods exclusively. As summarised in Table 2 , websites, Facebook and email were the most commonly used internet technologies. The use of websites or email for participant engagement appeared to be stable across the study inclusion period (2006–2016). Studies using social networking sites, such as Facebook, to engage participants were first published in 2011 and were used consistently thereafter.

a Studies engaging participants by advertising on multiple websites or on multiple forums are regarded as using one type of internet technology.

For participant recruitment , advertisements and posts on websites were the most commonly used online method ( n = 27/51; 53%). The level of detail provided about the websites used varied considerably (see Table 2 ). Nine articles (18%) named the website, 12 (24%) gave a general description, six (12%) provided no information, and four (8%) created a study-specific website for recruitment. Facebook was the most common social networking site used for participant recruitment ( n = 18/51; 35%). Five articles (10%) reported the use of another social networking site (e.g., Twitter, MySpace) and five (10%) did not name the social networking site used. Email was the next most common online method for recruitment ( n = 14/51; 27%), with invitations sent to members of electronic mailing lists, listservs, research panels and registries. Several studies sought to recruit participants by posting study information on blogs, forums and discussion boards ( n = 10/51, 20%). Less common recruitment methods included: respondent-driven sampling online, where existing participants were asked to invite their friends to participate (via email, Facebook or an unspecified method); dissemination of the study invitation through online social networks (snowballing); and the use of researchers’ own personal online networks.

Few studies reported on the success of using the internet to recruit participants in research compared to offline methods. Of the 25 studies that reported using both offline and online methods, less than a third ( n = 7; 28%) commented on how their sample was sourced or the relative success of each recruitment strategy. Four studies found online methods yielded more enrolled participants than offline methods [ 34 – 37 ] and three studies reported the opposite [ 38 – 40 ]. Recruitment sources and success rates were reported by half of the studies using either a single ( n = 8/18, 44%) or multiple methods of online recruitment ( n = 3/6, 50%).

For the retention of participants in longitudinal research, five studies used email to keep in contact ( n = 5/7, 71%), one used a study website and one became ‘friends’ with participants on Facebook. Four studies ( n = 4/7, 57%) employed both offline (e.g., mail, phone, SMS) and online retention methods [ 34 , 41 – 43 ]. Again, the success of online versus offline methods for retaining participants was poorly reported. Only one study provided details on retention rates using email reminders and a subsequent mail-out to non-responders [ 34 ] and concluded that multiple reminders using online and offline modes of contact improved overall response rates. Two studies reported retention rates of the cohort overall, rather than by the method used to maintain contact [ 41 , 42 ] and one study did not report retention rates, yet remarked that Facebook was a more effective retention tool than email [ 43 ].

Using the internet to trace participants who had been lost to follow-up was reported in six studies. The majority ( n = 5/6; 83%) combined this with offline methods (e.g., electoral roll, mail, phone, school roll). Most commonly, online tracing was done via social networking sites (e.g., Facebook, Myspace, Friends United) using the platform’s messaging feature to send private messages to potential participant matches, identified by the information publicly displayed on their profile. Researchers also traced participants using internet search engines or by posting messages on relevant websites requesting participants to contact them. Half of the six studies using internet tracing reported on the success of this compared to offline tracing methods [ 44 – 46 ]. All three concluded that social networking sites were a valuable tool to trace and reconnect with participants, with Masson et al. [ 44 ] reporting a higher response rate for participants traced via Facebook than those traced using the electoral roll and contacted via post. Conversely, a fourth study commented that social media tracing was less successful than offline methods but did not provide tracing success rates [ 47 ].

How are ethical and consent procedures reported?

The majority of research articles reported obtaining study approval from an ethics committee or institutional review board ( n = 46/58; 79%). Ethical approval was not specifically mentioned in 10 articles (17%). One article stated that the researchers did not seek ethical approval [ 48 ] and another was noted as exempt from ethical review [ 49 ].

Informed consent was obtained online in approximately one third of studies via electronic signature, email or online checkboxes ( n = 19/58, 33%) and one study obtained consent via text message [ 50 ]. Despite the online nature of recruitment, offline methods of informed consent (verbal or post) were also common ( n = 16/58, 28%). ‘Implied consent’ was reported in four studies (7%) [ 35 , 48 , 51 , 52 ] where the researchers regarded that participants had provided consent by the act of participating in online data collection. Some articles did not mention whether ( n = 12/58, 21%) or how ( n = 5/58, 9%) consent was obtained.

Of the 40 studies involving adolescents or children, 12 (30%) stated that parental consent was obtained if participants were younger than 16 or 18 years with eight of these studies also obtaining child assent. Parental consent was waived in nine studies (23%) involving adolescents (aged 11–17 years). Reasons provided related to the anonymous nature of the study, the study’s minimal risk, the perception that parental permission would deter adolescent participation, to prevent participants disclosing sensitive information to their parents (i.e. sexual identity) and national age of consent laws [ 20 , 48 , 52 – 55 ]. Sensitivity of the topic alone (e.g., adolescent mental or sexual health) had little bearing on whether parental consent was sought. Nineteen articles (48%) involving adolescents or children did not discuss parental consent procedures.

Of the six studies that used the internet to trace participants, three had previously obtained consent for follow-up, without specifying the method of contact in this consent [ 46 , 56 , 57 ]. Two studies did not have formal permission to re-contact individuals, likely due to the length of time elapsed (10–50 years) since initial contact [ 44 , 47 ], and one study did not report consent procedures [ 45 ].

What ethical concerns are identified?

Sixty percent of the reviewed articles did not comment on any ethical concerns associated with using the internet to engage participants. The remaining articles ( n = 26/65) discussed one or more ethical considerations. As summarised below, some of these issues were specific to family and child research online (e.g., parental consent, age verification, children’s vulnerability) while others are more broadly applicable (e.g., privacy and confidentiality, disparities in internet access).

Parental consent

Several articles noted that recruiting children into research online and obtaining parental consent can be ethically complex and logistically difficult [ 36 , 58 – 61 ]. The required dialogue between researcher, child and parent is challenging to achieve in the absence of face-to-face communication [ 36 , 54 ]. Researchers must adequately inform parents, gain their trust, and reassure them that the research is legitimate and reputable [ 60 , 62 ]. This may be facilitated by personally contacting parents or by providing them access to multiple sources of study information (e.g., study websites and social networking profiles) [ 36 ]. One review article suggested utilising video or audio recordings to enable parents and children to provide consent/assent online [ 63 ]. Study authors noted that further information and guidance on best practices of gaining parental consent online are required [ 11 , 54 ].

Obtaining parental consent via post or email for children engaged in research online had several limitations. One study reported that very few children returned signed consent forms by post [ 60 ], possibly due to the inconvenience and cost of this process. There is also limited capacity for researchers to ensure that participants are sufficiently informed [ 59 ], and a risk of parental consent forms being fraudulently signed by young participants or non-parents [ 34 , 59 , 64 ]. One study reported excluding young adolescents (13–16 years) due to concerns that they might fraudulently complete the online parental consent forms themselves [ 34 ]. Given these barriers, Henderson et al. [ 59 ] recommended seeking child and parent consent via telephone. This allows researchers to separately test child and parent speak understanding of the study procedure, risks and benefits, and enables verification of the child’s age with the parent. Amon et al. [ 11 ] alternatively proposed that researchers interested in recruiting young people via social media may benefit from directly targeting parents instead of children.

Several other methods were used to obtain consent for child participation. Boydell et al. [ 62 ] encouraged participants (aged 14–18 years) to discuss the study with their parents and then included a tick box in the online consent form for adolescent participants to declare this. One study performed a mature minor assessment of interested respondents aged under 18 years by telephone [ 20 , 65 , 66 ]. This involved the researcher assessing a participant’s age, schooling, general maturity, and ability to understand the study, to determine their capacity to provide informed consent.

In some studies involving children and adolescents, waiving parental consent was considered a methodological and ethical necessity. For example, Moinian [ 58 ] conducted an ethnographic study of children’s diary entries within an online community to explore the online activities that children engaged in outside of their parents’ knowledge or control—a topic that made “the process of obtaining parents’ consent practically impossible” [ 58 , p. 56]. In other studies, parental consent was waived if parental permission was likely to deter participation [ 54 ], or would put participants at harm. For example, parental permission was waived in two US studies involving gay and bisexual adolescents as young as 13 years [ 52 , 55 ] as it was considered that young people may be placed at risk by disclosing their sexual identity to their parents. Some studies noted that where parental consent was required by law, younger participants were under-represented due to their reluctance to seek parental permission [ 61 , 67 , 68 ] or due to parents not providing consent [ 69 ]. These articles debated the age at which an adolescent should be able to give informed consent without parental permission, although this was not specifically discussed in the context of online research.

Age verification

Verification of participant identity and age presents challenges in online research [ 53 , 59 , 62 ]. This was of particular concern in studies involving child and adolescent populations, with one article commenting that “attempts can, and arguably should, be made to verify the age of participants [in online research with young people]” [ 62 , p. 13]. Verifying participant age was also pertinent to research with adults, as minors may participate without the knowledge of the investigators [ 64 ].

To verify participant age, researchers may need to directly contact interested participants, examine the age noted on participants’ social networking profiles or employ other age verification tools [ 59 , 62 , 70 ]. While researchers recognised that age misrepresentation is not confined to online research [ 59 , 62 , 71 ], one study argued that online users are inclined to falsify their age [ 70 ]. While the use of online consent procedures requires researchers to trust that participants are who they say they are [ 54 , 64 ], it was acknowledged that postal consent procedures are subject to similar issues [ 59 ].

Participant vulnerability

A few articles noted that children and young people participating in online research should be “generally regarded as ‘vulnerable subjects’ requiring a heightened sensitivity to issues of gaining informed consent and ensuring confidentiality” [ 72 , p. 554]; issues that were further amplified in the online sphere [ 63 , 72 ]. Children are increasingly online and have greater knowledge, confidence and reliance upon digital technologies than adults [ 63 ]. However, they may not be aware of public and private boundaries and “are reluctant to remain anonymous” online [ 58 , p. 65]. Children openly express themselves on the internet, revealing real names, locations and personal details, and may have different understandings of privacy and the permanence of online content [ 58 , 72 ]. This is ethically challenging as children, more than adults, may freely share sensitive and personal information online without realising that others, including researchers, can access their posts and information [ 72 ].

Henderson et al. [ 72 ] provided further comment on the vulnerability of children in social media-based research and the array of complex ethical issues regarding obtaining informed consent and assuring privacy and confidentiality that may be difficult for adults to grasp, let alone children. As young people are generally disempowered in research, the authors suggest that researchers consult with children across all stages of the study so that they have greater control over the research process. They also suggest, as recommended by Sharkey et al. [ 71 ], that consent of children and young people in social media-based research should be ongoing or phased rather than a one-off occurrence, involving consultation with children at all stages of the research (from design to data collection, analysis and reporting).

Across the articles, there was little discourse on whether online research elevates risk among vulnerable people compared to offline research. One article stressed the importance of considering “whether individuals who choose to engage in internet research may be more vulnerable to safety concerns than their offline counterparts”, as there is some evidence that frequent internet users have poorer mental health than others [ 59 , p. 1120]. Sharkey et al. [ 71 ] asserted that the context and medium of research itself can increase vulnerability. In their case, the online setting, the sensitive topic, the young age of participants, the lack of face-to-face interaction and the need to protect anonymity together created the ‘perfect storm’ of ethical issues, requiring careful consideration of ethical practice and how to maintain anonymity of a high-risk and vulnerable population.

Participant privacy, confidentiality and anonymity

Participant privacy, confidentiality and anonymity were the most commonly reported ethical concerns. These concerns are applicable to internet research across all disciplines, not just those involving families and children. Articles commented on the complexity of separating public and private domains online, particularly for social networking sites and online communities that encourage users to share information [ 45 , 46 ]. The public nature of these sites was seen to be “inherently at odds with the confidential or anonymous nature of research” [ 63 , p. 62]. While the terms and conditions of social media platforms usually indicate the potential for public disclosure, it is unlikely that users intend or expect their online information to be used by researchers [ 47 , 72 ]. Additionally, confidentiality may be breached by participants inadvertently revealing their association with a study by writing on a comment board, ‘liking’ a study page, or adding a link to a study site on their own profile [ 45 , 54 ]. Researchers are therefore reliant on participants understanding and using privacy settings [ 63 , 72 ] to prevent unintended sharing of personal information and research involvement [ 47 ].

Additional issues concerned the risk of revealing participant identities via website breaches or deductive disclosure, and protecting participant privacy in studies that traced participants. Notably, and of benefit to other researchers, many articles reflected on how they sought to maintain participant confidentiality, privacy and anonymity in research conducted online and offered advice for future research, as discussed below.

Several articles discussed the risk of deductive disclosure of an individual’s identity for research conducted within ‘open’ discussion boards, forums and web pages [ 47 , 58 , 62 , 64 , 71 ]. Using a search engine to trace phrases or quotes from a research report or publication may reveal participants, thus breaching anonymity, confidentiality and privacy. Such risks may be reduced by omitting, anonymising or paraphrasing quotes [ 71 ], albeit potentially at the expense of the integrity of the original post. Researchers expressed concern that data that have been de-identified for reporting may not remain so with future technological developments [ 72 ].

Regarding online tracing, several articles describing the use of social media to trace and re-connect with lost participants questioned whether searching for a participant on social networking sites was a violation of online privacy [ 44 , 47 , 72 ]. One study that traced participants online stated that they only found information about participants from sites that individuals made publicly available [ 44 ]. The authors reasoned that this was essentially no different to finding individuals who list their name in public telephone directories or electoral rolls, since social media users are able to conceal or publicise their profiles. However, they noted that “there are legitimate concerns as to whether some (perhaps more vulnerable) individuals understand the full implications of making their personal details publicly visible” [ 47 , p. 35], potentially to a much larger audience than intended [ 44 , 47 ].

Three articles reported on participants’ experiences of being traced using social media. Two studies found participants were predominantly positive about the experience, although somewhat surprised about being re-contacted via social networking sites [ 44 , 56 ]. Participants perceived Facebook to be a “more secure and private way of being contacted than by telephone or letter” [ 44 , p. 32] and many were friendly and informal when contacted via Facebook. Conversely, one study found participants were cautious about engaging with researchers via social media as they were an older generation who lacked experience and confidence with that medium [ 47 ].

In general, using social media to trace participants was considered a valuable and worthwhile approach. However, authors were mindful that online tracing needs to be undertaken with care to ensure participant privacy and confidentiality. The majority of articles that used social media to trace participants ( n = 4/5) discussed the ethical challenges they encountered when using this method [ 44 – 47 ]. They also provided advice on how to minimise breaches in participant confidentiality and improve study legitimacy, including how to contact participants privately, prevent individuals or researchers inadvertently revealing their involvement in a study and to ensure that a traced participant is a correct match.

Of all reviewed articles, a number emphasised the responsibility of the researcher in protecting online data and participant anonymity, confidentiality and privacy, and how this should be a top priority [ 43 , 59 , 71 , 73 , 74 ]. Authors stressed that researchers must be aware of participants’ expectations about privacy and confidentiality online [ 74 ] and be mindful of participants’ awareness and knowledge (or lack of knowledge) of internet technologies and privacy settings [ 47 ]. One article suggested that researchers have an “ethical duty to call attention to this lack of privacy” and to inform participants if their privacy and anonymity cannot be guaranteed online [ 43 , p. 142]. Baker [ 43 ] used Facebook as a communication tool and source of data in ethnographic research with adolescents and required participants to add the researcher as a contact or ‘friend’. This presented an ethical challenge as all participants would be able to see one another on Facebook. To call attention to this, the consent form used Facebook terminology, explicitly stated that the anonymity and privacy of the participant could not be protected and instructed participants on how they could adjust their Facebook privacy settings to avoid inadvertent sharing of information.

Articles also highlighted that websites and platforms are rapidly changing as new features are developed [ 45 , 54 ]. This requires researchers to be familiar with privacy settings and to keep up to date with changes that could affect their participants [ 44 ]. For example, advertising on social networking sites as a recruitment strategy requires researchers to know and understand how advertising features operate and what personal information is collected from participants interested in participating. While Facebook does not reveal individual user information to the advertiser, researchers may want to consider minimising the amount of information exchanged within such sites and direct interested participants to a secure external website where they have greater control over privacy [ 20 , 54 , 73 ].

Informed consent

A small number of articles discussed issues regarding informed consent when engaging participants online. Compared to some offline recruitment methods (such as recruiting participants face-to-face or by telephone), researchers have a “lack of immediate and real-time engagement with participants at the time of program enrolment online” [ 54 , p. 1084] which may limit their ability to assess participant comprehension and ensure participants are truly informed [ 54 , 64 ]. These concerns brought into question whether informed consent and implied consent can be trusted in online surveys. While one option is to ask participants to click a button at the beginning of an online survey to acknowledge their agreement and consent before being allowed to proceed, this method relies on participants having a sound understanding of the study and being competent to give informed consent [ 54 , 64 ]. Obtaining verbal consent may be one way to help ensure participants are exposed to consent information prior to enrolment in online research [ 54 , 59 ]. Telephone conversations allow researchers to use back-questioning techniques to help ensure participants have read and understood consent documents and the procedures, risks and benefits of a study.

As the ability to obtain face-to-face and verbal consent in internet research can be challenging, new and multiple strategies to ensure consent is informed are required. This may be particularly relevant if the research is anonymous or involves children and adolescents. One study reported how, during piloting of an online intervention, youth “didn’t express any concerns about why we were asking for sensitive information or what we would be doing with participant data” [ 54 , p. 1086]. The authors concluded that this indicated children and young people are generally not interested in reading formal informed consent materials or may not have the ability to understand these concepts. Alternative, tailored information available in a number of different formats (e.g., audio-clips, images, video or bullet-point summary) and readily accessible throughout the duration of the study (e.g., sent via email, attached to the survey) could be considered [ 54 , 63 , 71 ]. Researchers could also give participants the opportunity to discuss the study online via a study page [ 54 , 71 ]. However, one article did comment that providing extra measures and sources of information may not guarantee understanding, regardless of whether the research is conducted online or face-to-face [ 71 ]. Alternatively, researchers could employ a phased consent approach as reported by Sharkey et al. [ 71 ], where separate consent was taken from participants for study registration, participation and use of direct quotes, in order to increase participants’ understanding of the research and study protocol. The importance of maintaining consent when engaging research participants via social media was also discussed by Henderson et al. [ 72 ]. The authors noted how the dynamic nature of social media, including changes in the people involved in social networks over time, may alter the context of the initial consent. This raises questions regarding the ethical decision-making of researchers in social media-based research, and “whether there should be measures to check that consent continues to be given” [ 72 , p. 551].

Disparities in internet access and sample representativeness

Some articles expressed concern over the ‘digital divide’, whereby internet-based recruitment strategies may limit the ability of researchers to reach groups disadvantaged by socioeconomic status or education, who lack internet access or digital literacy [ 36 , 54 , 59 , 74 ]. This may introduce bias and limit the representativeness of the study sample [ 60 , 75 ]. Conversely, some researchers argued that the digital divide was not a concern when recruiting young people online, given the high rates at which youth, including disadvantaged youth, use and access the internet [ 52 , 54 , 76 ].

Many articles commented on the representativeness of their online sample, with mixed findings. In some cases, samples recruited online were representative of the target population in terms of socioeconomic status and regional distribution [ 20 , 52 , 66 ] yet not regarding age or gender [ 20 , 66 , 77 ]. Online recruitment methods successfully engaged traditionally hard-to-reach populations such as regional, isolated or stigmatised groups [ 20 , 55 , 74 ] and allowed a broader sample to be recruited compared to offline methods of recruitment [ 55 , 78 ]. Others found online recruitment was associated with under-representation of some populations (e.g., minority groups, low socioeconomic status populations) and over-representation of others (e.g., tertiary educated) [ 20 , 49 , 66 , 79 ], although it was argued that similar sample biases are reported in offline recruitment methods [ 20 , 66 , 78 ]. One study reported similar demographic data for participants traced via Facebook and offline methods [ 46 ].

In most articles, sample representativeness was not addressed as an ethical concern but rather as a methodological limitation of the study design (e.g., [ 75 , 80 ]). However, two articles did highlight the need to justify using the internet to engage research participants [ 54 , 59 ]. They proposed that researchers should consider whether online methods are appropriate to engage and interact with research participants and which method (online or offline) will reach more of the target population. Care should also be taken to ensure that the chosen method of engagement is best for the participant, not the researcher, and to minimise the impact of disparities in internet access on participant inclusion or selection bias.

Three articles discussed the ethical concerns associated with offering incentives in research [ 44 , 62 , 81 ], yet only one focused on incentives in online research. Boydell et al. [ 62 ] aimed to recruit youth to online focus groups and was interested in offering an incentive. The authors were however concerned that requesting personal details from potential participants could compromise anonymity. As available literature provided no guidance on this issue, they opted not to offer an incentive, which they state, might have contributed to their poor online recruitment rates.

Risks to researchers

Similar to participants, researchers may also be subject to privacy and safety risks when engaging participants online. While several articles reported interacting with participants online, for example via Facebook messaging features or discussion boards, only one study described the potential impact of this on the researcher and how they protected their personal privacy by creating a new Facebook account used solely for contacting participants [ 43 ]. Another study briefly acknowledged that sensitive research on adolescent self-harm may include risks for both participants and researchers, yet did not discuss this further [ 71 ].

What ethical guidelines are available and being used to inform internet research?

Guidance offered by academic articles.

The academic literature search identified a small number of articles offering ethical guidance when engaging research participants online. This is best illustrated in three case studies [ 54 , 59 , 71 ] where the authors list and present solutions to ethical issues encountered when recruiting young people on social networking sites and discussion forums. Other articles also provided ethical guidance by discussing the challenges encountered, the amendments made to study design and the strategies employed when using email in family research [ 74 ], recruiting participants into online focus groups [ 60 , 62 ] and tracing research participants online [ 44 , 47 ]. Several articles called for researchers to publish the methodological and ethical challenges they encounter when engaging research participants online and how these issues can be resolved [ 44 , 59 , 71 , 72 , 74 ], particularly when tracing participants [ 45 , 47 ] and engaging adolescents [ 73 ].

Guidelines and resources cited by academic articles

Of the 58 research articles identified in the review, only three [ 35 , 37 , 82 ] described following internet-specific ethical guidelines when designing or undertaking their online research: these included professional guidelines produced by the Association of Internet Researchers (AoIR) [ 83 ] and the American Psychological Association (APA) [ 84 ], and practical guidance offered in academic literature [ 71 , 85 ]. Some articles [ 20 , 42 , 54 , 65 , 86 ] reported consulting ethical guidelines produced by their institutional review board [ 56 ], country of origin (e.g., National Statement on Ethical Conduct in Human Research [ 27 ], Belmont Report [ 87 ]) or the World Medical Association [ 88 ]. However, none of these provide specific ethical guidelines on the conduct of internet research. While the Belmont Report clearly precedes internet research, other more recent guidelines do not refer to the internet or online research. A small number of internet-specific ethical guidelines were recommended by articles [ 59 , 64 , 71 ], including professional guidelines published by the AoIR [ 83 , 89 ], APA [ 84 ] and the British Psychological Society (BPS) [ 90 , 91 ]. Other internet-specific ethics resources were also briefly mentioned [ 92 – 96 ].

Available guidelines

A grey literature search identified a number of guidelines published from January 2006 to February 2016 specific to the ethical conduct of internet research. These included five professional guidelines developed by government bodies, societies and collaborative academic working groups (see Table 3 ) and ten university guidelines (see Table 4 ). Other resources included book chapters and websites.

Note: The guideline published by the American Psychological Association [ 84 ] cited by articles in the review is not included in this table as it was published before 2006 and was considered outdated.

Regarding professional guidelines, the most widely cited ethical guidelines for internet research are those published by the AoIR [ 83 ] and the BPS [ 90 , 97 ]. These offer broad advice to help researchers and research ethics committees make ethical decisions across all forms of internet research. They do not prescribe a code of practice or a ‘rule book’ but instead advocate for a flexible, case-based approach. Both recognise that the guidelines should not be considered as complete and that ethical decision-making will continue to evolve as new online tools are developed and new issues emerge. Produced in the USA, the AoIR guidelines briefly describe ongoing dilemmas in internet-based research before listing a set of guiding questions that should be considered when undertaking or reviewing online research methods. The document provides a basic overview of ethical considerations applicable to all types of internet research. While it does not specifically mention recruiting, retaining or tracing participants, it does raise key ethical concerns applicable to recruitment and outlines particular issues that may arise in online research with minors or vulnerable persons. Many of the ethical considerations listed in the AoIR guidelines are explored in more detail in the BPS guidelines, particularly regarding active recruitment of research participants. The BPS guidelines also provide recommendations and practical advice to guide ethical decision-making. These guidelines do not refer to child-specific ethical issues other than briefly stating that parental consent procedures will likely need to be obtained offline.

The grey literature search identified other professional guidelines not cited by articles identified in the review. Produced in Australia, Clark et al. [ 101 ] provide comprehensive advice for the use of digital data in research. Predominantly focusing on research using ‘big data’ rather than the direct involvement of participants, each issue is discussed in detail with examples and questions for consideration. The document also offers guidance to research ethics committees about ethical review processes. Produced in Norway, The National Committee for Research Ethics in the Social Sciences and the Humanities (NESH) guidelines [ 99 ] provide a brief discussion of ethical issues common to internet research. This does not give explicit guidance on how to overcome these issues but highlights how researchers must keep these issues in mind while continuing to follow general, fundamental ethical principles. The guidelines also include a section on protecting children in online research and emphasise the importance of obtaining parental consent and verifying age. Similar issues are raised in guidelines produced by the USA Secretary’s Advisory Committee on Human Research Protections (SACHRP) [ 98 ], where regulatory and ethical considerations pertaining to internet research are discussed, including online recruitment.

The grey literature search identified several universities, predominantly within the USA and UK, providing publicly accessible guidance on the ethical use of the internet in research. The content of the university guidelines varied widely and included comprehensive guidelines (e.g., [ 96 , 109 ]), general procedures and policies regarding recruitment, data collection and data storage (e.g., [ 104 ]) and resources that reiterate the AoIR guidelines (e.g., [ 102 ]). Guidelines developed by universities were often aimed at researchers and developed by ethics committees and review boards, to provide step-by-step procedural guidance to assist with ethical review processes. The search also identified one guideline produced by a university hospital [ 108 ] providing ethics-based recommendations and protocols for social media-based research, including online tracing. While some guidelines discussed ethical issues specific to online research with children, most did not. Two guidelines from universities in the USA reiterated the Children’s Online Privacy and Protection Act (COPPA), a federal law that requires verifiable parental consent if researchers collect personal information from children under 13 years of age.

Other resources describing the ethical issues of online research were also identified in the search. Several book chapters were identified [ 92 , 94 , 95 , 111 ]. These provide examples of online research methods and discuss common ethical issues, rather than offering procedural guidance. An online entry in the Stanford Encyclopaedia of Philosophy [ 112 ] provides a detailed discussion of key ethical issues in internet research including a verifying age and obtaining consent with minors. Several research ethics blogs and blog posts [ 113 – 115 ] and an online training program [ 93 ] were also found.

This review is the first attempt to identify and integrate literature on the ethics of using the internet to engage participants in family and child research. The review is timely in the context of changing communication patterns, increased social mobility and a research environment with limited funding. Communicating via the internet has rapidly emerged as the ‘new normal’ in everyday life; a development that has extended to the research world. Researchers (and, by extension, ethics committees) have a number of ethical concerns when engaging participants online. Some of these apply when engaging any research participant online, such as protecting participant privacy and confidentiality, obtaining consent and disparities in internet access. Engaging minors online raises additional ethical concerns and considerations, including parental consent, age verification and participant vulnerability. While these issues highlight some overlap between offline and online methods of participant engagement, the ‘visible’, far-reaching and dynamic nature of online platforms, especially social media, can inflate risk and introduce new challenges. Clearly, there are specific nuances of the online environment that the research community should be aware of. However, as highlighted in this review, many research articles do not report the ethical issues associated with engaging research participants online, and few refer to internet-specific ethical guidelines.

The review identified three unique ethical issues to be considered when engaging minors in research online. The first relates to the ethical and practical complexities of obtaining parental consent online. Parental consent serves to respect children’s developing autonomy and to provide for their protection [ 27 ], although in some cases may not be appropriate or protective. Inconsistent approaches and ambiguities in defining an adolescent, a mature minor and minimal risk research have led to extensive debate on the ethics and value of parental consent [ 116 – 118 ]. As recognised in this review, parental consent regulations differ by location, participant age, and research design and context, and are subject to case-by-case interpretation by ethics committees [ 119 , 120 ]. Academic researchers used a variety of methods to record parental consent. Limitations were reported for both offline and online procedures, and many authors noted a lack of guidance on ethical best practice. This was reflected in the grey literature search, which provided no formal guidance on how to document parental consent online. Instead, professional guidelines suggest researchers utilise offline consent procedures [ 90 , 99 ] while one university guideline recommends limiting online research with minors to minimal risk research that qualifies for a waiver of parental consent [ 103 ]. Guidelines on ethical best practice for obtaining parental consent online are clearly needed. In the interim, researchers and ethics committees may seek guidance from literature identified in this review [ 59 ] and elsewhere [ 4 , 121 ].

The second unique issue of verifying participant age was an important yet challenging aspect of engaging minors in research online as young people may misrepresent their age to participate. Articles suggested several strategies to verify age, including directly contacting the participant or their parent. However, depending on the nature and context of the study, this may be inappropriate or unfeasible. Others suggested validating participant age by reviewing social media profiles. This raises further concern for participant privacy and may not be a valid approach if the minor has falsified their age (e.g., Facebook users must be at least 13 years old to create an account). Articles did not explicitly discuss the ethical implications of inadvertently engaging younger or underage participants in research, despite the potential for them to be exposed to sensitive or age-inappropriate content. Guidance on this issue is mixed: one guideline [ 98 ] suggests researchers include fact-checking measures in online research instruments or employ age verification software; others suggest limiting online research with minors to minimal risk research [ 103 ] or to conduct the research offline [ 99 ].

The third issue identified in the review relates to children’s vulnerability in online research. Young people are often referred to as ‘digital natives’: a younger generation born into a ubiquitous digital environment who have used the internet, social media and mobile devices from an early age [ 122 ]. However, young people may also be digitally naïve [ 123 ], openly disclosing personal and potentially sensitive information without apparent concern for their privacy, without understanding or considering the permanence or far-reaching nature of online content, and without intending for their information to be used by others. Internet users are largely unaware of targeted advertising practices and the extent to which their online information and behaviours are collected and used by third parties [ 124 ], including researchers [ 125 ]. Privacy and data use policies are outlined in click-to-agree contracts and in website Terms of Service. Few users read or comprehend these often lengthy and indecipherable agreements and few understand how to protect their privacy online [ 126 ]. Discourse on how these issues apply in research is growing [ 127 ], yet literature exploring whether privacy risks are exacerbated for minors and vulnerable groups online is limited. Due to a lack of maturity, understanding, interest and/or digital literacy, it is possible that children and adolescents are less inclined than adults to read privacy and data use policies and understand how their online information is collected and used. Yet, this demographic group are prolific internet and social media users, and are increasingly encouraged to share their personal information [ 128 ]. This brings into question the appropriateness of researchers using this information to target individuals to participate in research, as is increasingly occurring.

Concerns were also raised about the possibility of participants, potentially those who are young or vulnerable, unwittingly ‘outing’ themselves as research participants online. This may occur due to a lack of knowledge regarding privacy settings, features and the reach of online platforms. While this may be no different to offline research where participants may disclose their participation to others, the audience is much more far-reaching in the online space and individuals may lose control of their information once they ‘release’ it online. These concerns require researchers to be transparent and openly inform prospective participants about potential risks to their privacy, confidentiality and anonymity online, as suggested by articles included in the review [ 43 ] and in recent literature [ 125 , 129 ].

An additional issue that received minimal attention in the review but which warrants further discourse is whether participants, particularly minors, are sufficiently informed in online research. One article noted that adolescents were generally uninterested in reading study information and informed consent materials [ 54 ]; an observation that has been reported by others engaging participants online and offline [ 130 , 131 ]. Children and adolescents may also misunderstand the information that is presented to them, which can be difficult for researchers to detect [ 132 ]. While researchers are advised to spend time with prospective participants and orally explain the research to them [ 133 , 134 ], this is often not possible or practical in online research. That young people are uninterested in consent materials or cannot understand them is ethically problematic in any research setting. These concerns may escalate in online research as parental consent is commonly waived, participants are separated physically and temporally from the researcher, and the immediacy of online platforms may prevent careful consideration of participation.

Despite recruiting participants online, many articles in this review obtained consent via traditional means (e.g., by post, face-to-face). The ongoing reliance on offline consent procedures may reflect concern for participant comprehension in online settings. However, the inability to assess whether participants are truly informed is not confined to online research (e.g., postal surveys), and articles often compared the deficiencies of online consent procedures against an idealised view of the communication than can, but often does not occur in face-to-face consent. Articles suggested several strategies to improve participant comprehension online, including video conferencing and phased consent. Some recognised the advantages of obtaining verbal consent and assessing comprehension via telephone, although we question the viability of this approach with large samples and its utility in anonymous research. Emerging evidence indicates that testing adolescents on their research rights and risks during the online consent process can improve study comprehension [ 135 ]. Further discourse on the effectiveness of alternative online approaches are warranted.

Our review has identified several insights and gaps in the academic literature that are worth noting. Firstly, while researchers have sought new ways to engage participants online, a continued reliance on traditional offline recruitment methods remains. The use of offline and online methods may help overcome technological barriers such as the digital divide but may also reflect uncertainty regarding the effectiveness of solely using the internet. Clear evidence for effectiveness is currently hampered by an absence of, or lack of detail in, reporting the success of recruitment, retention and tracing methods. Reporting ethics approval processes and how consent is obtained online could also be improved. The absence of this information does not ease concerns regarding the validity and credibility of online recruitment and online consent. We encourage researchers to report response metrics and/or recruitment source data as well as consent procedures. Researchers reporting results for internet surveys may wish to refer to Eysenbach’s checklist [ 136 ].

Over half of the articles included in the review did not discuss ethical issues beyond general ethical procedures. The limited discussion of ethical concerns aligns with that reported by Henderson et al. [ 72 ], who reviewed studies using social media to involve children or young people in research. They found articles were similarly silent on ethical issues. It is unclear why ethical issues are not acknowledged or at least not reported. It is possible that researchers view the ethical issues of engaging participants online as similar to offline methods. This has implications for research integrity and participant safety as some issues and risks posed online are different to traditional offline methods. Alternatively, researchers may not expect to comment on ethical issues if their study has received approval by a governing ethics committee, and publication word limits may preclude detailed description of ethical issues. Like Henderson et al. [ 72 ], we do not consider studies that are silent on ethical issues as unethical. Given the increasing use of online methods, the research community will greatly benefit from more detailed documentation of the ethical and methodological issues encountered or considered and the actions taken to address them.

We recognise that many of the ethical concerns identified in this review pertained to online recruitment. Using the internet to retain or trace participants was not as widely used or at least not commonly reported. This could be due to limitations in our search strategy, as articles may not explicitly refer to retention and tracing in their title, abstract or key words. Alternatively, it could reflect the smaller number of longitudinal studies (which require retention and tracing) relative to cross-sectional studies, or that use of the internet in this way is an emerging method not yet in widespread use. Nonetheless, it is surprising that so few retention and tracing studies were identified given the recognised difficulty in maintaining research cohorts in longitudinal research [ 137 , 138 ]. It is unclear whether the internet is not used for this purpose because researchers and/or ethics committees view it as problematic and unethical, or because they are unfamiliar with such methods. Most articles that reported online retention used email to maintain contact with participants, which was not considered to be ethically concerning. Other online retention strategies involving social media have been reported, such as researchers ‘friending’ participants on Facebook [ 139 , 140 ]. While these strategies can be effective at retaining adolescents in research, they raise ethical issues regarding participant confidentiality, the participant-researcher relationship, and potentially accessing information beyond what participants originally consent to. Most tracing studies identified in this review used social media to search for participants lost to follow-up, with many authors providing comment on the ethical and methodological considerations undertaken. Researchers interested in tracing participants via social media in the future will benefit from consulting these articles and other relevant literature [ 25 , 141 ]. Given its effectiveness, tracing participants via social media is likely to become more popular among researchers, but the lack of ethical guidance for this method is concerning.

Lastly, we show that most researchers do not refer to internet-specific ethical guidelines when reporting online recruitment, retention or tracing methods. Previous research has identified a perception from researchers and ethics committee members that there are few guidelines available to inform internet research [ 142 ]. Our review shows internet-specific ethical guidelines are available, yet researchers are largely unaware of them. Existing guidelines provide an overview of common ethical concerns, many of which are identified in this review, that are applicable when recruiting participants online. They do however vary in their content, scope and guidance, which may require researchers and ethics committee members to familiarise themselves with each resource and use the guidelines collectively when planning or reviewing online research. Most guidelines do not specifically comment on actively engaging research participants online, particularly for retaining or tracing participants via social media or for recruiting minors online.

Since conducting our literature searches in early 2016, additional internet-specific guidelines have emerged [ 143 – 147 ]. These guidelines generally focus on social media content as data rather than directly engaging participants online. Guidelines specifically addressing social media recruitment have also been developed [ 125 , 148 ], providing case studies and recommendations for both researchers and ethics committees. Given the dynamic and diverse nature of the internet, the majority of internet-specific ethical guidelines are purposefully broad, flexible and applicable to a range of online research methods. While there is a strong argument for guidelines to remain broad, a more structured procedural guideline that specifically and clearly outlines common methodological and ethical considerations when recruiting, retaining and tracing participants, including children, online will be well received.

Limitations

This review has several limitations. While we searched six academic databases and aimed to be inclusive with terminology, there may be relevant studies and articles that were not captured by the search strategy. For example, articles may describe ethical issues without referring to ‘ethics’ in their title, abstract or key words. Studies using online retention and tracing strategies may also not explicitly report this, as discussed, which may account for the few retention and tracing studies identified. While Facebook is a common research tool, the high proportion of studies using Facebook compared to other social media platforms may be due to this being the only platform specifically named in our search strategy. We recognise articles in other disciplines not included in this review would inform family and child research. We also recognise the limitations of the grey literature search, which was neither exhaustive nor systematic, with results limited to the first 100 hits. Google is not well suited for complex search queries and results are retrieved by popularity; therefore, relevant ethical guidelines may have been missed.

This scoping review provides a comprehensive overview of the ethical issues that arise when engaging participants in family and child research online and the available ethical guidance on online research. It serves as a useful resource for researchers and ethics committee members who are considering the ethical appropriateness of research in this context. All in all, using the internet and social media to recruit, retain and trace participants is possible, but must be harnessed appropriately. This requires researchers and ethics committees to be cognisant of a range of ethical issues, including the unique challenges associated with engaging minors online, and to carefully consider how these issues apply when planning, conducting and reviewing research.

Our review shows that researchers consider themselves primarily responsible for ensuring internet research is conducted ethically, yet it remains unclear to what extent researchers are aware of and appropriately informed of the specific ethical issues associated with engaging research participants online, particularly minors. Ethical guidelines are essential to consistent and high-quality decision-making, yet the lack of reported use of available guidelines and the scarcity of academic literature describing ethical concerns means research and ethical review are potentially occurring without suitable guidance. Increasing the research community’s understanding of the contextual and ethical challenges of engaging participants online is clearly required. This can be achieved by encouraging broad dissemination and use of current guidelines and resources (e.g., [ 83 , 97 , 125 ]) across research institutes and ethics committees. We also encourage researchers to provide more detail in academic articles when reporting on the internet as a research tool, including response metrics, ethical approval and consent procedures, and methodological and ethical considerations, particularly for research with children and adolescents. This review brings the ethical issues and guidelines presented in this review to the attention of the wider research community and promotes further discourse regarding the ethical conduct of recruiting, retaining and tracing participants online in family and child research.

Supporting information

Funding statement.

This work was funded by La Trobe University through the Transforming Human Societies Research Focus Area Scheme 1, 2015; Associate Pro Vice Chancellor (Research), College of Science, Health & Engineering; and Pro Vice Chancellor (Research). Authors SH, NJH, NQ, SKB, JMN and SBC were supported by the Roberta Holmes Transition to Contemporary Parenthood Program (Australian Communities Foundation, Coronella sub-fund). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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