qualitative research ethics

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Ethics in Qualitative Research Controversies and Contexts

Martyn Hammersley - The Open University, UK
Anna Traianou - Goldsmiths, University of London, UK
Description

All researchers need to think about research ethics, and for a variety of reasons it is an increasingly important part of research methods training. Ethics in Qualitative Research explores this field and presents a distinctive perspective; one that is at odds with the assumptions underpinning ethical regulation, but also with the views of many qualitative researchers today.

Martyn Hammersley and Anna Traianou emphasize the difficult and controversial character of ethical issues, and examine the philosophical assumptions involved, the social contexts in which key ethical principles arise, and their implications for research practice.

The authors argue that the starting point for any discussion of research ethics must be the values intrinsic to research, above all the commitment to knowledge-production. However, the pursuit of inquiry is rightly constrained by external values, and the book focuses on three of these: minimizing harm, respecting autonomy, and protecting privacy. These values are shown to be far from unequivocal in character, often in conflict with one another, or with the commitments of research, and always subject to situational interpretation and practical judgment.

It is argued that in the present challenging times it is essential that qualitative researchers think clearly about, and stand up for, their principles.

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As a former Masters student and novice qualitative researcher, had I had more insight into the complexities around ethics detailed in this book before entering the field I may well have been better equipped to deal with some of the more problematic issues I encountered. Chloe Roberts Action Learning: Research & Practice

What is ethical acting in qualitative research, what want to say it when you act ethical or unethical, and just imagine that how solid are questions at the heart of this book. The introduction is also immediately announced that answering these questions is not easy and that the answers given by the authors are controversial. Such a statement makes me curious and will read something very new in the hope you go with the book to get started. (Translation).

Very useful on the ethics course to encourage critique and reflection on ethical issues in qualitative research and to support the students in developing ethical awareness

Martyn Hammersley and Anna Traianou have set out to examine some important underlying assumptions and concepts in ethics in qualitative research. Starting with a historical context for the ever increasing ethical requirements in research since the mid 20thC, the authors then set the tone and tenor of the discussion by raising the debate around the perceived purpose of research ethics. They invoke the moral dimension of research aims and outcomes, differentiating between the ethical requirements of research within an institutional context together with the morality of differing research design in various populations and from a range of perspectives. This is an informative and thought-provoking text that will appeal to postgraduate students keen to use qualitative methods as well as experienced researchers, wanting to revisit and re-examine some important ethical debates.

Excellent and thought provoking text which challenges mainstream beliefs around ethics in qualitative research. Would cause you to challenge your core understanding on principles associated with certain aspects relating to qualitative research. Particularly liked the synopsis of chapters in the summary section too. Useful if you are re-visiting the text after a break away.

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Sample materials & chapters.

Introduction

Sociology of the Sacred - Ch.1 : Introduction

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Ethical considerations associated with Qualitative Research methods

Introduction.

This high-level guidance has been developed by the UK Statistics Authority’s Centre for Applied Data Ethics (CADE), and the UK Government Data Quality Hub (DQHub), based at the Office for National Statistics (ONS). The guidance can be used as a practical resource to help researchers identify different ethical issues when conducting qualitative research.

This guidance is not exhaustive but aims to support researchers navigating the ethical issues surrounding qualitative research projects (particularly in relation to primary data collection). It brings together existing literature on qualitative research methods and their ethical concerns. Links to further resources are provided if you would like to read about aspects in more detail.

The guidance has been created for researchers using qualitative methods within the ONS . However, the ethical considerations discussed, and the mitigations for these, can be more widely applied to all types of qualitative research.

The guidance is divided into several parts.  

An introduction to qualitative research and why ethics matters in this space. 
An overview of some of the ethical considerations associated with qualitative research methods, and some potential mitigations for these issues. This includes an overview of some of the qualitative methods used within the ONS.
An ethics checklist which summarises the main points covered in this guidance.  
A list of helpful links to further resources.

Chapter 7. Ethics

The “fly on the wall” approach in anthropology, still taught as an antidote to the influences of one’s subjectivity on the research process, only obscures the fact that even those who try to be insects are, at the very least, already influencing the social environment in which they conduct their fieldwork and, more important, are already committing themselves to a very clear moral and political position—that of letting things remain as they are, or leaving the status quo untouched. Neutrality is impossible—or better still, neutrality may work for the maintenance of privileges, but it does not work for all. Many forms of oppression, exclusion, and death continue to be perpetrated in the name of objectivity and detachment. —Joȃo Helios Costa Vargas, Catching Hell in the City of Angels

Introduction

Joȃo Helios Costa Vargas spent two years living in South Central Los Angeles, a region of predominantly Black neighborhoods known for high rates of poverty, crime, and violence. When recounting the findings of his ethnographic research, he refused to write “neutrally.” As a human being, he viewed the prospect of writing as if he were merely “a fly on the wall” distasteful if not unethical. He wanted to name oppression outright. To testify to the outrages and injustices he saw perpetrated against those living in these communities by those with power—the police, school authorities, the public at large. And so he did, and his book is both more powerful and more honest for that. His choice is both an example of reflexivity (see chapter 6) and an example of ethics in practice. In this chapter, we explore a great many ethical considerations made by qualitative researchers and argue that being ethical is a constant and ongoing responsibility for any researcher and particularly for those involved in social science. Unlike other fields of science, the lines between doing right and doing wrong are sometimes hard to distinguish, a situation that puts tremendous pressure on every qualitative researcher to consider ethics all the time .

This is a very important chapter and should not be overlooked. As a practical matter, it should also be read closely with chapters 6 and 8. Because qualitative researchers deal with people and the social world, it is imperative they develop and adhere to a strong ethical code for conducting research in a way that does not harm. There are legal requirements and guidelines for doing so (see chapter 8), but these requirements should not be considered synonymous with the ethical code required of us. Each researcher must constantly interrogate every aspect of their research—from research question to design to sample through analysis and presentation—to ensure that a minimum of harm (ideally, zero harm) is caused. Because each research project is unique, the standards of care for each study are unique. Part of being a professional researcher is carrying this code in one’s heart, being constantly attentive to what is required under particular circumstances. Chapter 7 provides various research scenarios and asks readers to weigh in on the suitability and appropriateness of the research. If done in a class setting, it will become obvious fairly quickly that there are often no absolutely correct answers, as different people find different aspects of the scenarios of greatest importance. Minimizing the harm in one area may require possible harm in another. Being attentive to all the ethical aspects of one’s research and making the best judgments one can clearly and consciously are integral parts of being a good researcher.

Being an Ethical Researcher

Being a competent qualitative researcher means being reflective (chapter 6) and being ethical. In the next chapter, we will explore the regulatory requirements of ethical practice, but it is important to recognize that being ethical goes well beyond following the rules and regulations. Born from an epistemological perspective (chapter 3) that places value on the diversity of meanings and unique perspectives of the humans we study, qualitative researchers’ ethics encompass truthfully and generously reporting those meanings and perspectives, being attentive to what people tell and show us, and honestly appraising the harm and efficacy of what we report. The rules and regulations guiding qualitative research tend to focus on the importance of informed consent and the general balancing of potential benefits against likely harms. However, our duties to those with whom we interact go well beyond these aspects of our research. Further, because each study is unique and involves relationships between a researcher and research “subjects,” proceeding ethically requires constant attention and deliberation. One might make dozens of decisions during the research process that have ethical implications. It is not permissible to stop thinking about ethics after you have submitted your application for institutional review board (IRB) review (more on this process in chapter 8) or once you have received permission to proceed with your study: “Ethics are more than a set of principles or abstract rules that sit as an overarching entity guiding our research.… Ethics exist in our actions and in our way of doing and practicing our research; we perceive ethics to be always in progress, never to be taken for granted, flexible, and responsive to change” ( Davies and Dodd 2002:281 ).

Reviewing agencies such as IRBs will not scrutinize all the ethical decisions you need to make throughout your research process. Only you can do this. It is thus vitally important that you develop your sense of ethics as part of your identity as a researcher. Being reflective can help, as you are more likely to identify and acknowledge and confront ethical issues if you are paying attention to the process.

This chapter is divided into two parts. The first part walks you through the research process, highlighting a variety of places where ethical issues may emerge. The second part presents several ethical scenarios. I encourage you to talk through these with a friend or colleagues from class. You may find as you do so that you disagree on what the “correct” ethical decision is. This is absolutely normal and an important lesson. There are many “gray” areas in ethical consideration where there is no clear right or wrong answer. Sometimes there are “least bad” courses of action. Being ethical does not always means doing the right thing—it simply means trying to find the right thing to do and being able to justify the decisions you make.

Part 1: Ethical Issues throughout the Course of the Study

Research design.

Many of the rules and regulations around conducting qualitative research focus on the research design. For example, institutional review boards routinely ask you to justify your sample, while including members of vulnerable populations (e.g., children) in the study will trigger a heightened review. In chapter 8, we will look more closely at the formal requirements, but before getting there, we need to take a step back and think about the study design more generally. Why is this study being conducted in the first place? If human subjects are involved (this is the aspect that triggers formal review), any study is going to affect them to some extent. The impact on the humans we study could be quite minimal, as in the case of unobtrusive observations in which no personal information is recorded. Or it could be substantial, as in the case where people are asked very personal and potentially “triggering” questions about a harmful phenomenon. Or it could be simply the inconvenience of being bothered by a nosy researcher. Is your study worth the bother? Recognize that the advantages of a successful study accrue to you in the first place (completing your degree requirements, publishing an article, etc.) and secondarily contribute to collective knowledge. Make sure that that secondary contribution is really worth it. This may require you to do enough foundational research to ensure that what you are doing is truly novel and worth the expense.

Once you have determined that, yes, it is worth doing this study because we don’t yet know the answer to the research questions you’ve posed and those questions are good questions to ask, you need to consider whether this is the best and least harmful way to answer those questions. Balance the contributions to knowledge and the potential harm to humans posed by the research. Sometimes, the knowledge is so important that we are willing to lean a little harder on our research subjects, causing them a bit more discomfort or potential harm than we would be willing to do for a study of less importance. To make this kind of calculation, you have to be very honest about the importance of your work, another aspect of reflexivity (chapter 6). You also have to think about your research subjects honestly and the power they have to protect themselves from your intrusion. Poor people often get studied more often than rich people because they have less power to protect themselves from unwanted intrusions on their privacy. Designing a study around easy-to-access people is an ethical decision. Sometimes it is the right decision, sometimes not.

Just as you have to consider your sample in terms of power and the ability of some groups to hide from your scrutiny, you also have to consider your sample in terms of who gets to be included and what the implications of exclusion are on our knowledge. Medical studies that exclude certain hard-to-reach populations out of convenience are poorer for that exclusion. You want to be very clear about stating and justifying both your inclusion criteria and your exclusion criteria. Inclusion criteria are those characteristics your research subjects must have in order to participate in the study. Being of adult age is a common inclusion criterion. Exclusion criteria are those characteristics that would disqualify people from being part of your study. These are established to protect potential participants, as in the case where those not born in the United States are excluded from a study that observes potential criminal behavior so as to protect them from deportation orders and reporting mandates. On the other hand, by excluding this group of people, you have limited their insights and perspectives from being heard.

Data Collection

Once you have designed your study in an ethical manner, you will have to find the people to match your inclusion criteria and invite them to participate. In most cases, you cannot ethically collect data without permission. This permission must often be in writing, and there are formal rules about what this writing looks like, which will be fully described in chapter 8. What about situations where you are simply observing behavior? If this is in a private setting, you will still need to get permission as well as access to the site. Who is giving you access to the site? This, too, raises ethical considerations. Is this a person with power (e.g., an employer) such that their permission may influence employees’ consent to be included in the study? If a principal of a high school allows you to observe teachers teach, does it matter that there is a lawsuit pending against the principal for unlawful terminations of various teachers? Yes, it does! You must consider how you and your research may be implicated in ongoing workplace issues. Ethics come into play even in public settings, especially in cases where the people being observed have little choice but to act in public (e.g., a community pool during a heatwave).

One of the obvious harms that can be created by a nosy researcher other than inconvenience and bother is the breaching of confidential statements or publications of private reflections and actions. You may think you are doing enough to protect your research subjects from harm by keeping what you learn anonymous (e.g., using pseudonyms or reporting only aggregate group data—e.g., “community pool members were rowdy”), but anonymity is easily breached. Even when no “identifiable information” is collected, the risk of being able to attribute data to particular individuals is never nonexistent. Formal rules and regulations specify in great detail various levels of anonymity and confidentiality permitted (see table 7.1). The bottom line is that we have to act as if what we write of people we observe and talk to may be individually identified (however unlikely) and consider what harm would occur to those people when we publish our research. This might necessitate multiple case sites to protect our subjects from identification (e.g., three community pools rather than just one) or even rethinking the kinds of questions we ask, refraining from pushing our interview subjects to address supplemental questions (those that are not directly tied to our research questions) that might cause them harm or embarrassment to them if they were identified.

Table 7.1. Anonymous and Confidential Data, A Vocabulary

Another aspect of gaining permission is deciding how much information about the study to provide in advance. Again, there are formal rules that require honesty, simplicity, and clarity when explaining the research study. The language must be understood by the particular research subjects. If one is doing research with children, the language describing the study is going to necessarily be different than if one is explaining the research study to adults. If one is doing research with nonnative English speakers, the language should be in the native language as well. There are many times, however, when these simple rules fail to take into account the research design’s requirements. Some researchers, especially psychologists, employ a certain level of deception in their research design, as stating honestly what the study is about would undercut the value of the findings. Accurate information is sometimes not possible without deception. When this is the case, reviewing agencies can make exceptions to the rule of fully informed consent so long as the deception is minimal and poses no harm and there is some debriefing after the fact (as in an experiment in which the full study is explained as soon as the experiment ends). There are other times, however, when researchers accurately describe the general purpose and goal of the study but fail to mention details that, had the subjects known in advance, they might have withheld their consent. This might be the case, for example, where a powerful CEO is told that he is taking part in a study of power dynamics at large corporations when in fact the study is also focused on gender imbalances and male CEOs’ biases toward women in leadership. The simple explanation was not deceptive, but the CEO may have decided to opt out had he received all the information. In such a case, the researcher needs to balance the potential benefits of the study with the likely harm to the subject and may very well come to the conclusion that this is an ethical practice. Others might disagree, of course.

There are a host of other questions to consider. How long will you stay in the field? What kinds of relationships will you form with the people you are observing, and how will you gracefully “exit” the field with the least amount of pain to those who have come to rely on your presence? What level of collaboration do you have with your participants? How deep are your interview questions? Are your probes too invasive? All of these are ethical questions that arise during the data collection phase.

More questions arise during data analysis and the presentation of your findings. Because we have not yet gotten to those subjects in this book, I am going to reserve much of the discussion on these and point them out in relevant chapters. There are two later-stage ethical challenges, however, that you need to plan for in advance: Who will own the data you collect? What kind of impact might the presentation or reporting of your findings have?

You will often need to think about who owns the data that has been collected and analyzed and who has rights of control over it. For example, some researchers negotiate access with employers or supervisors at particular worksites. Those employers or supervisors may then expect some control over the data collected. Maybe they want to see the results first, before anyone else, or perhaps they even want a say in which results are made public. It is important to work out any agreements on the use of the data in advance so you are not put in a position of having someone else dictate what you can do with your data.

You should also consider the impact your study may have on those who granted you access to the site and to all of those who were willing to be interviewed or observed. If your findings could result in a negative outcome (anything from bad press to loss of business or community support to public shaming of an individual or group), you should anticipate this and consider your ethical obligations, obligations that may exist to multiple persons and groups and may be in conflict with one another. How will you handle this?

Many of these questions (and more) will arise during the course of your research. Keeping a journal will help you reflect on the challenges. Every decision you make will probably carry an ethical consideration. To give you a sense of how ambiguous these ethical decision points can be, let’s walk through a few ethical scenarios.

Part 2: Ethical Scenarios

Below are several short scenarios that will help you think through how to spot ethical issues and how you might resolve them. Pay attention to all stages of the research process, from design to publication. It’s possible that one or more of the scenarios are fatally flawed from the very start. Think about what each researcher owes to (1) the scientific community of which they are a part and (2) the human beings with whom they are building relationships. How to properly balance the two? A few questions follow each scenario, but you need not confine your consideration to these questions. Note that each scenario might bring up more than one ethical issue!

Scenario 1: The Glass Ceiling

Jacinda would like to understand how women deal with sexual discrimination and harassment in engineering firms. She is able to secure a temporary job as a receptionist at Engineer-O, a Fortune 500 firm. To everyone in the company, she is simply a “temp.” While working there, she approaches several women about their experiences. A few are willing to sit down and be recorded by her as she asks them questions about working at the company. In addition to the interviews, she keeps notes of her own daily experiences at the company (during her breaks and at night). She witnesses many examples of sexual harassment—managers who make sexual comments to their employees. She also takes pictures of the office and cubicle walls of some of the male employees, where sexually explicit images of women and/or misogynistic sayings are posted.

Questions to consider: From whom must Jacinda get consent for her study? The women she interviews, the men whose walls she takes pictures of, those whose activities she observes? Does she need to tell her boss that she is an undercover researcher? Should she?

Scenario 2: #BlackLivesMatter

Anne is a White twenty-five-year-old graduate student who is interested in police-community relations, especially in urban neighborhoods that have experienced conflicts (e.g., police shootings of unarmed Black men and children). She has a very close friend, Jamal, who lives in one such neighborhood. He allows her to hang out with him for a summer. She carries around a notebook and writes down observations frequently. She also records a few interviews with Jamal, his best friends, his parents, and his beloved grandmother, whose house he lives in. One Sunday, while she is at his grandmother’s house, the police knock down the front door and force everyone to lie down on the ground as they search the premises. She begins to cry and writes movingly afterward of the pain and terror written on Joyce’s (Jamal’s grandmother) face as they lie next to each other with a gun at their necks. On another occasion, she is present when Jamal finds out his best friend has been fatally shot by a local gang. She gets in the car with Jamal as he looks for the killer. He asks her to hold his gun. She writes all of this down and plans on publishing everything.

Questions to consider: What are Anne’s duties and responsibilities in terms of publishing these events? From whom must she get consent? What if Joyce and Jamal’s friends did not know she was a graduate student conducting a study? Did she commit a crime when she carried Jamal’s gun for him? Should she have received permission from the police department before conducting this study?

Scenario 3: The Unhoused

Julie is doing a study of the unhoused in San Francisco. She approaches several men on the street and explains her study and asks if she can follow them around. Twelve agree. She spends several weeks in their company—getting to know them, following them as they panhandle and recycle old bottles and cans, and asking them questions about their lives. She records many of their conversations on her phone. When it is too cold outdoors, she sometimes allows one or two men to crash at her apartment. She knows they really dislike the shelters and how they are run. She also encourages them all to use her shower during the course of the study. Other times, she buys them food. Once or twice, she has paid for beers and has sat with them as they drink and reminisce about their childhoods. And still other times she has given “Julius” cash, even though there is a chance he will use it to buy heroin. After six months, she realizes she has enough material to write a book about the men. She leaves San Francisco and moves back to her home in Berkeley. Although she tells the men the study is over, she does not follow up with them or provide any of them with contact information for her.

Questions to consider: What does Julie owe the unhoused participants of her study after six months? Should she have provided them with a way to contact her in the future? Should she have made an attempt to reconnect with them? Was it appropriate to allow the men to use her apartment? Would it have been wrong not to do so? Should Julie have helped the men more? Did she help them too much? Was it wrong to drink beer with them? To give Julius cash he might have used to buy heroin? If her book is published to great success, does she owe any of the proceeds to the men?

Scenario 4: Studying Upside Down

Franco is a graduate student interested in understanding the practice of racial discrimination and how this might be related to individual beliefs about insider/outsider status within a community. During the Trump administration, he heard a lot about “White working-class racists,” but he suspects that wealthy White persons are just as discriminatory as poor White persons. He designs a research plan that allows him to hear what people have to say about “who belongs” in the US and a part that allows him to actually observe interactions they have with others. As his father belongs to a very fancy golf club, he plans to (1) interview the members of the club and (2) golf at the club and otherwise hang out and watch interactions between (primarily White) members and (primarily Latinx) staff. He did not ask the club’s permission. The club leadership heard about the study, however, when one of its members mentioned they saw a young man writing things down in a notebook when they were in an argument with a caddy. The club pressured the IRB of Franco’s university to revoke his application. Franco doesn’t fight the decision (how can he?). Still interested in understanding racial discrimination, he uses the same research design, but now at a poor neighborhood’s community pool. He finds some examples of racism in his interviews with the White working-class pool-goers and observes one example of what could be racial discrimination.

Questions to consider: Should Franco have approached the golf club directly to secure permission for this study? Why do you think he did not? Does it matter that his father was a member? Was his original design a good one? Why or why not? How would you have handled the IRB revocation? Is Franco’s new site a good one? Why or why not? Is his decision to observe at a community pool ethical?

Scenario 5: Political Deception

Mumbi, a graduate student from Kenya, is fascinated by American politics. In particular, she wants to understand the increasingly visible role of race among politically active conservatives in the US. She plans to do research at a local Republican Party headquarters during campaign season. She will work there herself and interview other volunteers. Mumbi’s informed consent form explains that she is doing research on “how people engage politically.” Informally, she tells her covolunteers that she is a Republican and that she voted for Trump. However, as a Kenyan citizen, she is not able to vote in the elections, and had she done so, she would never have voted for Trump. She thinks Trump is truly the devil.

Questions to consider: Is Mumbi’s failure to identify herself unethical? What does she owe the people she is interviewing? Is it ethical to omit the motivations for the study? Had she included all the facts about herself and her motivation for the study, would she have received different information from the people she interviewed? Is deception justified in this case or not? Should Mumbi worry about her personal safety?

Scenario 6: What Do Your Friends Say About You?

Serena is a psychology graduate student trying to understand how people make friends. She runs an experiment using primarily college students at a large research university in the Pacific Northwest. In the experiment, she provides students notecards with interesting facts about some strangers and records which strangers get selected as potential new friends. Some of the facts include (1) shops at Walmart, (2) has traveled outside the US, and (3) owns a MAGA hat or T-shirt. She finds that those who espoused fact (2) were overwhelmingly chosen as friends and that only one in five chose a friend that selected (3) and zero chose friends who chose (1). Based on these findings, she develops a theory that people value cross-cultural experiences. She debriefs the students in the experiment and tells them that (1) was the big loser!

Questions to consider: Are there any problems with this study design? Who is likely to be included and who is not likely to be included in the sample? What might be wrong with the theory Serena developed? Were any college students harmed by the questions asked? What would you have advised Serena before she began running the experiment?

Quick Recap of Common Ethical Challenges to Consider

Who was included in the sample design? Who was not included?
How did the researcher get entry into the field?
What did the researcher tell people about their research?
Was there “informed consent”?
When reporting findings, was care taken to protect the anonymity , confidentiality , and dignity of the research subjects?
Does this study contribute to our knowledge about a subject in a way that does not foster harm ?

The Top 5 Ethical Considerations in Qualitative Research

Qualitative research is a valuable tool for understanding human behavior, experiences, and perspectives. It can be used in a variety of fields including sociology, psychology, education, and business. However, like all research, qualitative research requires careful ethical considerations to ensure that it is conducted in a manner that is respectful, fair, and responsible. This article outlines the top five qualitative research ethics to consider.

Informed Consent

Informed consent is one of the most important qualitative research ethics to consider in qualitative research. Informed consent means that participants are fully informed about the purpose and nature of the research, the procedures involved, any potential risks or benefits, and how their data will be used. Participants must have the right to refuse to participate or to withdraw from the study at any time. Market Researchers must also obtain written consent from participants and ensure that they understand their participation is voluntary.

In some cases, obtaining informed consent can be challenging. For example, in studies involving vulnerable populations, such as children, obtaining informed consent can be particularly difficult. They may need to consider obtaining written consent from guardians, such as parents or caregivers. Researchers must always be sensitive to the needs and limitations of their participants and find ways to obtain informed consent that are appropriate and respectful.

Confidentiality and Privacy

Confidentiality and privacy are essential qualitative research ethics to consider and are often protected by law. Participant’s personal information and responses must always be kept confidential and private. Researchers must take steps to protect the confidentiality of their participants by using pseudonyms or other identifiers such as ID numbers, and by storing data securely. They must also ensure that their research does not invade the privacy of participants by respecting their right to refuse to answer certain survey questions or to have certain information shared.

In some cases, confidentiality and privacy can be particularly challenging. For example, in studies involving sensitive topics, researchers must take extra precautions to protect the confidentiality of their participants and maintain their trust. They may need to use more secure methods of quality data collection, such as encrypted online surveys or face-to-face interviews conducted in private locations.

Respect for Participants

Respect for participants is another important ethical consideration in qualitative research. Researchers must be sensitive to the needs, values, and beliefs of their participants, and always treat them with dignity and respect. This means that researchers must be aware of their own biases and assumptions to avoid imposing their own beliefs on their participants. They must also be sensitive to cultural and linguistic differences to find ways to communicate effectively with participants who may have different backgrounds or experiences.

In addition, researchers must be mindful of the power dynamics involved in research. Participants may feel pressure to answer more positively or to provide the answers they think the researcher wants to hear. Researchers must be careful to ensure that their research is conducted in a manner that is fair and respectful.

Lastly, researchers must be careful not to overburden their participants with lengthy or intrusive data collection methods. They must also be mindful of the potential for researcher bias in data collection and analysis and take steps to minimize its impact.

Data Collection and Analysis

Data collection and analysis are essential components of qualitative research, but they also raise concerns in regard to qualitative research ethics. Researchers must ensure that their methods of data collection and analysis are appropriate and valid and that they do not manipulate or alter the data in any way to convey a different story. They must also be transparent about their methods and ensure their research is replicable.

Use of Findings

The final ethical consideration in qualitative research is the use of findings. Researchers must use their findings in a responsible and respectful manner to ensure that they are not used to harm or stigmatize participants or groups. They must also be transparent about the limitations of their findings and avoid making sweeping generalizations that may not be supported by the findings.

In addition, researchers must consider the potential impact of their findings on policy and practice. They should use their findings to inform evidence-based decision-making and communicate their results in a clear and accessible manner to stakeholders, policymakers, and the public. By doing so, they can ensure that their research is contributing to positive change and improving the lives of those affected by the issues being studied. Ultimately, conducting ethical qualitative research requires a thoughtful and reflective approach that values the perspectives and experiences of participants, and produces findings that are meaningful and impactful.

Conducting ethical qualitative research requires a commitment to upholding the rights and dignity of participants, while also producing valuable and valid findings. The top five qualitative research ethics to consider include:

Obtaining informed consent
Protecting confidentiality and privacy
Showing respect for participants
Conducting appropriate data collection and analysis
Using findings responsibly.

By prioritizing these considerations, researchers can ensure that their research is conducted in a respectful, fair, and responsible manner and produces findings that can contribute to positive and more informed change in society.

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Ethics with More-Than-Human Participants Practice As Research

In this seminar, Dr Kay Sidebottom discusses how to ethically account for environment, atmosphere and presence of non/human others in research. As qualitative researchers, we know (but perhaps don’t always acknowledge) how much the environment, atmosphere and presence of non/human others can affect our enquiries. In our attempts to apply the ‘God-trick’ (Haraway, 1988) of the all-seeing, all-knowing objective observer we are encouraged to mitigate for bias, minimise variables, and account for distractions. However, when we ignore the non-human participants always-already involved in our projects (the bee at the window; the wind in our hair; the cat on our lap) we miss the opportunity to create new meaning and consider research as ‘event’, as human participants entangle with the naturalised others that necessarily shape their experience and understanding. In this session we will think about the implications of inquiry in a world of multiplicity, which does not situate humans as discrete containers but bodies with the capacity to be affected and affect others. We will also explore what the implications are for considering the role of more-than-humans in our ethical practices. In a world where ethics is often a human-centred, initial tick-box exercise, what might a more expansive and inclusive approach mean for the process of our enquiries? Dr Kay Sidebottom is a Lecturer in Education, and Programme Director for a new MSc Education at the University of Stirling. Her current research explores how teachers can work with posthuman ideas to facilitate meaningful and disruptive education spaces for our complex times. With a background in community and adult education, her pedagogical specialisms include critical, radical and anarchist education, arts-based practice and community philosophy.

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Ethical Issues in Research: Perceptions of Researchers, Research Ethics Board Members and Research Ethics Experts

Marie-josée drolet.

1 Department of Occupational Therapy (OT), Université du Québec à Trois-Rivières (UQTR), Trois-Rivières (Québec), Canada

Eugénie Rose-Derouin

2 Bachelor OT program, Université du Québec à Trois-Rivières (UQTR), Trois-Rivières (Québec), Canada

Julie-Claude Leblanc

Mélanie ruest, bryn williams-jones.

3 Department of Social and Preventive Medicine, School of Public Health, Université de Montréal, Montréal (Québec), Canada

In the context of academic research, a diversity of ethical issues, conditioned by the different roles of members within these institutions, arise. Previous studies on this topic addressed mainly the perceptions of researchers. However, to our knowledge, no studies have explored the transversal ethical issues from a wider spectrum, including other members of academic institutions as the research ethics board (REB) members, and the research ethics experts. The present study used a descriptive phenomenological approach to document the ethical issues experienced by a heterogeneous group of Canadian researchers, REB members, and research ethics experts. Data collection involved socio-demographic questionnaires and individual semi-structured interviews. Following the triangulation of different perspectives (researchers, REB members and ethics experts), emerging ethical issues were synthesized in ten units of meaning: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. This study highlighted several problematic elements that can support the identification of future solutions to resolve transversal ethical issues in research that affect the heterogeneous members of the academic community.

Introduction

Research includes a set of activities in which researchers use various structured methods to contribute to the development of knowledge, whether this knowledge is theoretical, fundamental, or applied (Drolet & Ruest, accepted ). University research is carried out in a highly competitive environment that is characterized by ever-increasing demands (i.e., on time, productivity), insufficient access to research funds, and within a market economy that values productivity and speed often to the detriment of quality or rigour – this research context creates a perfect recipe for breaches in research ethics, like research misbehaviour or misconduct (i.e., conduct that is ethically questionable or unacceptable because it contravenes the accepted norms of responsible conduct of research or compromises the respect of core ethical values that are widely held by the research community) (Drolet & Girard, 2020 ; Sieber, 2004 ). Problematic ethics and integrity issues – e.g., conflicts of interest, falsification of data, non-respect of participants’ rights, and plagiarism, to name but a few – have the potential to both undermine the credibility of research and lead to negative consequences for many stakeholders, including researchers, research assistants and personnel, research participants, academic institutions, and society as a whole (Drolet & Girard, 2020 ). It is thus evident that the academic community should be able to identify these different ethical issues in order to evaluate the nature of the risks that they pose (and for whom), and then work towards their prevention or management (i.e., education, enhanced policies and procedures, risk mitigation strategies).

In this article, we define an “ethical issue” as any situation that may compromise, in whole or in part, the respect of at least one moral value (Swisher et al., 2005 ) that is considered socially legitimate and should thus be respected. In general, ethical issues occur at three key moments or stages of the research process: (1) research design (i.e., conception, project planning), (2) research conduct (i.e., data collection, data analysis) and (3) knowledge translation or communication (e.g., publications of results, conferences, press releases) (Drolet & Ruest, accepted ). According to Sieber ( 2004 ), ethical issues in research can be classified into five categories, related to: (a) communication with participants and the community, (b) acquisition and use of research data, (c) external influence on research, (d) risks and benefits of the research, and (e) selection and use of research theories and methods. Many of these issues are related to breaches of research ethics norms, misbehaviour or research misconduct. Bruhn et al., ( 2002 ) developed a typology of misbehaviour and misconduct in academia that can be used to judge the seriousness of different cases. This typology takes into consideration two axes of reflection: (a) the origin of the situation (i.e., is it the researcher’s own fault or due to the organizational context?), and (b) the scope and severity (i.e., is this the first instance or a recurrent behaviour? What is the nature of the situation? What are the consequences, for whom, for how many people, and for which organizations?).

A previous detailed review of the international literature on ethical issues in research revealed several interesting findings (Beauchemin et al., 2021 ). Indeed, the current literature is dominated by descriptive ethics, i.e., the sharing by researchers from various disciplines of the ethical issues they have personally experienced. While such anecdotal documentation is relevant, it is insufficient because it does not provide a global view of the situation. Among the reviewed literature, empirical studies were in the minority (Table 1 ) – only about one fifth of the sample (n = 19) presented empirical research findings on ethical issues in research. The first of these studies was conducted almost 50 years ago (Hunt et al., 1984 ), with the remainder conducted in the 1990s. Eight studies were conducted in the United States (n = 8), five in Canada (n = 5), three in England (n = 3), two in Sweden (n = 2) and one in Ghana (n = 1).

Summary of Empirical Studies on Ethical Issues in Research by the year of publication

Further, the majority of studies in our sample (n = 12) collected the perceptions of a homogeneous group of participants, usually researchers (n = 14) and sometimes health professionals (n = 6). A minority of studies (n = 7) triangulated the perceptions of diverse research stakeholders (i.e., researchers and research participants, or students). To our knowledge, only one study has examined perceptions of ethical issues in research by research ethics board members (REB; Institutional Review Boards [IRB] in the USA), and none to date have documented the perceptions of research ethics experts. Finally, nine studies (n = 9) adopted a qualitative design, seven studies (n = 7) a quantitative design, and three (n = 3) a mixed-methods design.

More studies using empirical research methods are needed to better identify broader trends, to enrich discussions on the values that should govern responsible conduct of research in the academic community, and to evaluate the means by which these values can be supported in practice (Bahn, 2012 ; Beauchemin et al., 2021 ; Bruhn et al., 2002 ; Henderson et al., 2013 ; Resnik & Elliot, 2016; Sieber 2004 ). To this end, we conducted an empirical qualitative study to document the perceptions and experiences of a heterogeneous group of Canadian researchers, REB members, and research ethics experts, to answer the following broad question: What are the ethical issues in research?

Research Methods

Research design.

A qualitative research approach involving individual semi-structured interviews was used to systematically document ethical issues (De Poy & Gitlin, 2010 ; Hammell et al., 2000 ). Specifically, a descriptive phenomenological approach inspired by the philosophy of Husserl was used (Husserl, 1970 , 1999 ), as it is recommended for documenting the perceptions of ethical issues raised by various practices (Hunt & Carnavale, 2011 ).

Ethical considerations

The principal investigator obtained ethics approval for this project from the Research Ethics Board of the Université du Québec à Trois-Rivières (UQTR). All members of the research team signed a confidentiality agreement, and research participants signed the consent form after reading an information letter explaining the nature of the research project.

Sampling and recruitment

As indicated above, three types of participants were sought: (1) researchers from different academic disciplines conducting research (i.e., theoretical, fundamental or empirical) in Canadian universities; (2) REB members working in Canadian organizations responsible for the ethical review, oversight or regulation of research; and (3) research ethics experts, i.e., academics or ethicists who teach research ethics, conduct research in research ethics, or are scholars who have acquired a specialization in research ethics. To be included in the study, participants had to work in Canada, speak and understand English or French, and be willing to participate in the study. Following Thomas and Polio’s (2002) recommendation to recruit between six and twelve participants (for a homogeneous sample) to ensure data saturation, for our heterogeneous sample, we aimed to recruit approximately twelve participants in order to obtain data saturation. Having used this method several times in related projects in professional ethics, data saturation is usually achieved with 10 to 15 participants (Drolet & Goulet, 2018 ; Drolet & Girard, 2020 ; Drolet et al., 2020 ). From experience, larger samples only serve to increase the degree of data saturation, especially in heterogeneous samples (Drolet et al., 2017 , 2019 ; Drolet & Maclure, 2016 ).

Purposive sampling facilitated the identification of participants relevant to documenting the phenomenon in question (Fortin, 2010 ). To ensure a rich and most complete representation of perceptions, we sought participants with varied and complementary characteristics with regards to the social roles they occupy in research practice (Drolet & Girard, 2020 ). A triangulation of sources was used for the recruitment (Bogdan & Biklen, 2006 ). The websites of Canadian universities and Canadian health institution REBs, as well as those of major Canadian granting agencies (i.e., the Canadian Institutes of Health Research, the Natural Sciences and Engineering Research Council of Canada, and the Social Sciences and Humanities Research Council of Canada, Fonds de recherche du Quebec), were searched to identify individuals who might be interested in participating in the study. Further, people known by the research team for their knowledge and sensitivity to ethical issues in research were asked to participate. Research participants were also asked to suggest other individuals who met the study criteria.

Data Collection

Two tools were used for data collecton: (a) a socio-demographic questionnaire, and (b) a semi-structured individual interview guide. English and French versions of these two documents were used and made available, depending on participant preferences. In addition, although the interview guide contained the same questions, they were adapted to participants’ specific roles (i.e., researcher, REB member, research ethics expert). When contacted by email by the research assistant, participants were asked to confirm under which role they wished to participate (because some participants might have multiple, overlapping responsibilities) and they were sent the appropriate interview guide.

The interview guides each had two parts: an introduction and a section on ethical issues. The introduction consisted of general questions to put the participant at ease (i.e., “Tell me what a typical day at work is like for you”). The section on ethical issues was designed to capture the participant’s perceptions through questions such as: “Tell me three stories you have experienced at work that involve an ethical issue?” and “Do you feel that your organization is doing enough to address, manage, and resolve ethical issues in your work?”. Although some interviews were conducted in person, the majority were conducted by videoconference to promote accessibility and because of the COVID-19 pandemic. Interviews were digitally recorded so that the verbatim could be transcribed in full, and varied between 40 and 120 min in duration, with an average of 90 min. Research assistants conducted the interviews and transcribed the verbatim.

Data Analysis

The socio-demographic questionnaires were subjected to simple descriptive statistical analyses (i.e., means and totals), and the semi-structured interviews were subjected to qualitative analysis. The steps proposed by Giorgi ( 1997 ) for a Husserlian phenomenological reduction of the data were used. After collecting, recording, and transcribing the interviews, all verbatim were analyzed by at least two analysts: a research assistant (2nd author of this article) and the principal investigator (1st author) or a postdoctoral fellow (3rd author). The repeated reading of the verbatim allowed the first analyst to write a synopsis, i.e., an initial extraction of units of meaning. The second analyst then read the synopses, which were commented and improved if necessary. Agreement between analysts allowed the final drafting of the interview synopses, which were then analyzed by three analysts to generate and organize the units of meaning that emerged from the qualitative data.

Participants

Sixteen individuals (n = 16) participated in the study, of whom nine (9) identified as female and seven (7) as male (Table 2 ). Participants ranged in age from 22 to 72 years, with a mean age of 47.5 years. Participants had between one (1) and 26 years of experience in the research setting, with an average of 14.3 years of experience. Participants held a variety of roles, including: REB members (n = 11), researchers (n = 10), research ethics experts (n = 4), and research assistant (n = 1). As mentioned previously, seven (7) participants held more than one role, i.e., REB member, research ethics expert, and researcher. The majority (87.5%) of participants were working in Quebec, with the remaining working in other Canadian provinces. Although all participants considered themselves to be francophone, one quarter (n = 4) identified themselves as belonging to a cultural minority group.

Description of Participants

With respect to their academic background, most participants (n = 9) had a PhD, three (3) had a post-doctorate, two (2) had a master’s degree, and two (2) had a bachelor’s degree. Participants came from a variety of disciplines: nine (9) had a specialty in the humanities or social sciences, four (4) in the health sciences and three (3) in the natural sciences. In terms of their knowledge of ethics, five (5) participants reported having taken one university course entirely dedicated to ethics, four (4) reported having taken several university courses entirely dedicated to ethics, three (3) had a university degree dedicated to ethics, while two (2) only had a few hours or days of training in ethics and two (2) reported having no knowledge of ethics.

Ethical issues

As Fig. 1 illustrates, ten units of meaning emerge from the data analysis, namely: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. To illustrate the results, excerpts from verbatim interviews are presented in the following sub-sections. Most of the excerpts have been translated into English as the majority of interviews were conducted with French-speaking participants.

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Ethical issues in research according to the participants

Research Integrity

The research environment is highly competitive and performance-based. Several participants, in particular researchers and research ethics experts, felt that this environment can lead both researchers and research teams to engage in unethical behaviour that reflects a lack of research integrity. For example, as some participants indicated, competition for grants and scientific publications is sometimes so intense that researchers falsify research results or plagiarize from colleagues to achieve their goals.

Some people will lie or exaggerate their research findings in order to get funding. Then, you see it afterwards, you realize: “ah well, it didn’t work, but they exaggerated what they found and what they did” (participant 14). Another problem in research is the identification of authors when there is a publication. Very often, there are authors who don’t even know what the publication is about and that their name is on it. (…) The time that it surprised me the most was just a few months ago when I saw someone I knew who applied for a teaching position. He got it I was super happy for him. Then I looked at his publications and … there was one that caught my attention much more than the others, because I was in it and I didn’t know what that publication was. I was the second author of a publication that I had never read (participant 14). I saw a colleague who had plagiarized another colleague. [When the colleague] found out about it, he complained. So, plagiarism is a serious [ethical breach]. I would also say that there is a certain amount of competition in the university faculties, especially for grants (…). There are people who want to win at all costs or get as much as possible. They are not necessarily going to consider their colleagues. They don’t have much of a collegial spirit (participant 10).

These examples of research misbehaviour or misconduct are sometimes due to or associated with situations of conflicts of interest, which may be poorly managed by certain researchers or research teams, as noted by many participants.

Conflict of interest

The actors and institutions involved in research have diverse interests, like all humans and institutions. As noted in Chap. 7 of the Canadian Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2, 2018),

“researchers and research students hold trust relationships, either directly or indirectly, with participants, research sponsors, institutions, their professional bodies and society. These trust relationships can be put at risk by conflicts of interest that may compromise independence, objectivity or ethical duties of loyalty. Although the potential for such conflicts has always existed, pressures on researchers (i.e., to delay or withhold dissemination of research outcomes or to use inappropriate recruitment strategies) heighten concerns that conflicts of interest may affect ethical behaviour” (p. 92).

The sources of these conflicts are varied and can include interpersonal conflicts, financial partnerships, third-party pressures, academic or economic interests, a researcher holding multiple roles within an institution, or any other incentive that may compromise a researcher’s independence, integrity, and neutrality (TCPS2, 2018). While it is not possible to eliminate all conflicts of interest, it is important to manage them properly and to avoid temptations to behave unethically.

Ethical temptations correspond to situations in which people are tempted to prioritize their own interests to the detriment of the ethical goods that should, in their own context, govern their actions (Swisher et al., 2005 ). In the case of researchers, this refers to situations that undermine independence, integrity, neutrality, or even the set of principles that govern research ethics (TCPS2, 2018) or the responsible conduct of research. According to study participants, these types of ethical issues frequently occur in research. Many participants, especially researchers and REB members, reported that conflicts of interest can arise when members of an organization make decisions to obtain large financial rewards or to increase their academic profile, often at the expense of the interests of members of their research team, research participants, or even the populations affected by their research.

A company that puts money into making its drug work wants its drug to work. So, homeopathy is a good example, because there are not really any consequences of homeopathy, there are not very many side effects, because there are no effects at all. So, it’s not dangerous, but it’s not a good treatment either. But some people will want to make it work. And that’s a big issue when you’re sitting at a table and there are eight researchers, and there are two or three who are like that, and then there are four others who are neutral, and I say to myself, this is not science. I think that this is a very big ethical issue (participant 14). There are also times in some research where there will be more links with pharmaceutical companies. Obviously, there are then large amounts of money that will be very interesting for the health-care institutions because they still receive money for clinical trials. They’re still getting some compensation because its time consuming for the people involved and all that. The pharmaceutical companies have money, so they will compensate, and that is sometimes interesting for the institutions, and since we are a bit caught up in this, in the sense that we have no choice but to accept it. (…) It may not be the best research in the world, there may be a lot of side effects due to the drugs, but it’s good to accept it, we’re going to be part of the clinical trial (participant 3). It is integrity, what we believe should be done or said. Often by the pressure of the environment, integrity is in tension with the pressures of the environment, so it takes resistance, it takes courage in research. (…) There were all the debates there about the problems of research that was funded and then the companies kept control over what was written. That was really troubling for a lot of researchers (participant 5).

Further, these situations sometimes have negative consequences for research participants as reported by some participants.

Respect for research participants

Many research projects, whether they are psychosocial or biomedical in nature, involve human participants. Relationships between the members of research teams and their research participants raise ethical issues that can be complex. Research projects must always be designed to respect the rights and interests of research participants, and not just those of researchers. However, participants in our study – i.e., REB members, researchers, and research ethics experts – noted that some research teams seem to put their own interests ahead of those of research participants. They also emphasized the importance of ensuring the respect, well-being, and safety of research participants. The ethical issues related to this unit of meaning are: respect for free, informed and ongoing consent of research participants; respect for and the well-being of participants; data protection and confidentiality; over-solicitation of participants; ownership of the data collected on participants; the sometimes high cost of scientific innovations and their accessibility; balance between the social benefits of research and the risks to participants (particularly in terms of safety); balance between collective well-being (development of knowledge) and the individual rights of participants; exploitation of participants; paternalism when working with populations in vulnerable situations; and the social acceptability of certain types of research. The following excerpts present some of these issues.

Where it disturbs me ethically is in the medical field – because it’s more in the medical field that we’re going to see this – when consent forms are presented to patients to solicit them as participants, and then [these forms] have an average of 40 pages. That annoys me. When they say that it has to be easy to understand and all that, adapted to the language, and then the hyper-technical language plus there are 40 pages to read, I don’t understand how you’re going to get informed consent after reading 40 pages. (…) For me, it doesn’t work. I read them to evaluate them and I have a certain level of education and experience in ethics, and there are times when I don’t understand anything (participant 2). There is a lot of pressure from researchers who want to recruit research participants (…). The idea that when you enter a health care institution, you become a potential research participant, when you say “yes to a research, you check yes to all research”, then everyone can ask you. I think that researchers really have this fantasy of saying to themselves: “as soon as people walk through the door of our institution, they become potential participants with whom we can communicate and get them involved in all projects”. There’s a kind of idea that, yes, it can be done, but it has to be somewhat supervised to avoid over-solicitation (…). Researchers are very interested in facilitating recruitment and making it more fluid, but perhaps to the detriment of confidentiality, privacy, and respect; sometimes that’s what it is, to think about what type of data you’re going to have in your bank of potential participants? Is it just name and phone number or are you getting into more sensitive information? (participant 9).

In addition, one participant reported that their university does not provide the resources required to respect the confidentiality of research participants.

The issue is as follows: researchers, of course, commit to protecting data with passwords and all that, but we realize that in practice, it is more difficult. It is not always as protected as one might think, because professor-researchers will run out of space. Will the universities make rooms available to researchers, places where they can store these things, especially when they have paper documentation, and is there indeed a guarantee of confidentiality? Some researchers have told me: “Listen; there are even filing cabinets in the corridors”. So, that certainly poses a concrete challenge. How do we go about challenging the administrative authorities? Tell them it’s all very well to have an ethics committee, but you have to help us, you also have to make sure that the necessary infrastructures are in place so that what we are proposing is really put into practice (participant 4).

If the relationships with research participants are likely to raise ethical issues, so too are the relationships with students, notably research assistants. On this topic, several participants discussed the lack of supervision or recognition offered to research assistants by researchers as well as the power imbalances between members of the research team.

Lack of Supervision and Power Imbalances

Many research teams are composed not only of researchers, but also of students who work as research assistants. The relationship between research assistants and other members of research teams can sometimes be problematic and raise ethical issues, particularly because of the inevitable power asymmetries. In the context of this study, several participants – including a research assistant, REB members, and researchers – discussed the lack of supervision or recognition of the work carried out by students, psychological pressure, and the more or less well-founded promises that are sometimes made to students. Participants also mentioned the exploitation of students by certain research teams, which manifest when students are inadequately paid, i.e., not reflective of the number of hours actually worked, not a fair wage, or even a wage at all.

[As a research assistant], it was more of a feeling of distress that I felt then because I didn’t know what to do. (…) I was supposed to get coaching or be supported, but I didn’t get anything in the end. It was like, “fix it by yourself”. (…) All research assistants were supposed to be supervised, but in practice they were not (participant 1). Very often, we have a master’s or doctoral student that we put on a subject and we consider that the project will be well done, while the student is learning. So, it happens that the student will do a lot of work and then we realize that the work is poorly done, and it is not necessarily the student’s fault. He wasn’t necessarily well supervised. There are directors who have 25 students, and they just don’t supervise them (participant 14). I think it’s really the power relationship. I thought to myself, how I saw my doctorate, the beginning of my research career, I really wanted to be in that laboratory, but they are the ones who are going to accept me or not, so what do I do to be accepted? I finally accept their conditions [which was to work for free]. If these are the conditions that are required to enter this lab, I want to go there. So, what do I do, well I accepted. It doesn’t make sense, but I tell myself that I’m still privileged, because I don’t have so many financial worries, one more reason to work for free, even though it doesn’t make sense (participant 1). In research, we have research assistants. (…). The fact of using people… so that’s it, you have to take into account where they are, respect them, but at the same time they have to show that they are there for the research. In English, we say “carry” or take care of people. With research assistants, this is often a problem that I have observed: for grant machines, the person is the last to be found there. Researchers, who will take, use student data, without giving them the recognition for it (participant 5). The problem at our university is that they reserve funding for Canadian students. The doctoral clientele in my field is mostly foreign students. So, our students are poorly funded. I saw one student end up in the shelter, in a situation of poverty. It ended very badly for him because he lacked financial resources. Once you get into that dynamic, it’s very hard to get out. I was made aware of it because the director at the time had taken him under her wing and wanted to try to find a way to get him out of it. So, most of my students didn’t get funded (participant 16). There I wrote “manipulation”, but it’s kind of all promises all the time. I, for example, was promised a lot of advancement, like when I got into the lab as a graduate student, it was said that I had an interest in [this particular area of research]. I think there are a lot of graduate students who must have gone through that, but it is like, “Well, your CV has to be really good, if you want to do a lot of things and big things. If you do this, if you do this research contract, the next year you could be the coordinator of this part of the lab and supervise this person, get more contracts, be paid more. Let’s say: you’ll be invited to go to this conference, this big event”. They were always dangling something, but you have to do that first to get there. But now, when you’ve done that, you have to do this business. It’s like a bit of manipulation, I think. That was very hard to know who is telling the truth and who is not (participant 1).

These ethical issues have significant negative consequences for students. Indeed, they sometimes find themselves at the mercy of researchers, for whom they work, struggling to be recognized and included as authors of an article, for example, or to receive the salary that they are due. For their part, researchers also sometimes find themselves trapped in research structures that can negatively affect their well-being. As many participants reported, researchers work in organizations that set very high productivity standards and in highly competitive contexts, all within a general culture characterized by individualism.

Individualism and performance

Participants, especially researchers, discussed the culture of individualism and performance that characterizes the academic environment. In glorifying excellence, some universities value performance and productivity, often at the expense of psychological well-being and work-life balance (i.e., work overload and burnout). Participants noted that there are ethical silences in their organizations on this issue, and that the culture of individualism and performance is not challenged for fear of retribution or simply to survive, i.e., to perform as expected. Participants felt that this culture can have a significant negative impact on the quality of the research conducted, as research teams try to maximize the quantity of their work (instead of quality) in a highly competitive context, which is then exacerbated by a lack of resources and support, and where everything must be done too quickly.

The work-life balance with the professional ethics related to work in a context where you have too much and you have to do a lot, it is difficult to balance all that and there is a lot of pressure to perform. If you don’t produce enough, that’s it; after that, you can’t get any more funds, so that puts pressure on you to do more and more and more (participant 3). There is a culture, I don’t know where it comes from, and that is extremely bureaucratic. If you dare to raise something, you’re going to have many, many problems. They’re going to make you understand it. So, I don’t talk. It is better: your life will be easier. I think there are times when you have to talk (…) because there are going to be irreparable consequences. (…) I’m not talking about a climate of terror, because that’s exaggerated, it’s not true, people are not afraid. But people close their office door and say nothing because it’s going to make their work impossible and they’re not going to lose their job, they’re not going to lose money, but researchers need time to be focused, so they close their office door and say nothing (participant 16).

Researchers must produce more and more, and they feel little support in terms of how to do such production, ethically, and how much exactly they are expected to produce. As this participant reports, the expectation is an unspoken rule: more is always better.

It’s sometimes the lack of a clear line on what the expectations are as a researcher, like, “ah, we don’t have any specific expectations, but produce, produce, produce, produce.” So, in that context, it’s hard to be able to put the line precisely: “have I done enough for my work?” (participant 3).

Inadequate ethical Guidance

While the productivity expectation is not clear, some participants – including researchers, research ethics experts, and REB members – also felt that the ethical expectations of some REBs were unclear. The issue of the inadequate ethical guidance of research includes the administrative mechanisms to ensure that research projects respect the principles of research ethics. According to those participants, the forms required for both researchers and REB members are increasingly long and numerous, and one participant noted that the standards to be met are sometimes outdated and disconnected from the reality of the field. Multicentre ethics review (by several REBs) was also critiqued by a participant as an inefficient method that encumbers the processes for reviewing research projects. Bureaucratization imposes an ever-increasing number of forms and ethics guidelines that actually hinder researchers’ ethical reflection on the issues at stake, leading the ethics review process to be perceived as purely bureaucratic in nature.

The ethical dimension and the ethical review of projects have become increasingly bureaucratized. (…) When I first started working (…) it was less bureaucratic, less strict then. I would say [there are now] tons of forms to fill out. Of course, we can’t do without it, it’s one of the ways of marking out ethics and ensuring that there are ethical considerations in research, but I wonder if it hasn’t become too bureaucratized, so that it’s become a kind of technical reflex to fill out these forms, and I don’t know if people really do ethical reflection as such anymore (participant 10). The fundamental structural issue, I would say, is the mismatch between the normative requirements and the real risks posed by the research, i.e., we have many, many requirements to meet; we have very long forms to fill out but the research projects we evaluate often pose few risks (participant 8). People [in vulnerable situations] were previously unable to participate because of overly strict research ethics rules that were to protect them, but in the end [these rules] did not protect them. There was a perverse effect, because in the end there was very little research done with these people and that’s why we have very few results, very little evidence [to support practices with these populations] so it didn’t improve the quality of services. (…) We all understand that we have to be careful with that, but when the research is not too risky, we say to ourselves that it would be good because for once a researcher who is interested in that population, because it is not a very popular population, it would be interesting to have results, but often we are blocked by the norms, and then we can’t accept [the project] (participant 2).

Moreover, as one participant noted, accessing ethics training can be a challenge.

There is no course on research ethics. […] Then, I find that it’s boring because you go through university and you come to do your research and you know how to do quantitative and qualitative research, but all the research ethics, where do you get this? I don’t really know (participant 13).

Yet, such training could provide relevant tools to resolve, to some extent, the ethical issues that commonly arise in research. That said, and as noted by many participants, many ethical issues in research are related to social injustices over which research actors have little influence.

Social Injustices

For many participants, notably researchers, the issues that concern social injustices are those related to power asymmetries, stigma, or issues of equity, diversity, and inclusion, i.e., social injustices related to people’s identities (Blais & Drolet, 2022 ). Participants reported experiencing or witnessing discrimination from peers, administration, or lab managers. Such oppression is sometimes cross-sectional and related to a person’s age, cultural background, gender or social status.

I have my African colleague who was quite successful when he arrived but had a backlash from colleagues in the department. I think it’s unconscious, nobody is overtly racist. But I have a young person right now who is the same, who has the same success, who got exactly the same early career award and I don’t see the same backlash. He’s just as happy with what he’s doing. It’s normal, they’re young and they have a lot of success starting out. So, I think there is discrimination. Is it because he is African? Is it because he is black? I think it’s on a subconscious level (participant 16).

Social injustices were experienced or reported by many participants, and included issues related to difficulties in obtaining grants or disseminating research results in one’s native language (i.e., even when there is official bilingualism) or being considered credible and fundable in research when one researcher is a woman.

If you do international research, there are things you can’t talk about (…). It is really a barrier to research to not be able to (…) address this question [i.e. the question of inequalities between men and women]. Women’s inequality is going to be addressed [but not within the country where the research takes place as if this inequality exists elsewhere but not here]. There are a lot of women working on inequality issues, doing work and it’s funny because I was talking to a young woman who works at Cairo University and she said to me: “Listen, I saw what you had written, you’re right. I’m willing to work on this but guarantee me a position at your university with a ticket to go”. So yes, there are still many barriers [for women in research] (participant 16).

Because of the varied contextual characteristics that intervene in their occurrence, these social injustices are also related to distributive injustices, as discussed by many participants.

Distributive Injustices

Although there are several views of distributive justice, a classical definition such as that of Aristotle ( 2012 ), describes distributive justice as consisting in distributing honours, wealth, and other social resources or benefits among the members of a community in proportion to their alleged merit. Justice, then, is about determining an equitable distribution of common goods. Contemporary theories of distributive justice are numerous and varied. Indeed, many authors (e.g., Fraser 2011 ; Mills, 2017 ; Sen, 2011 ; Young, 2011 ) have, since Rawls ( 1971 ), proposed different visions of how social burdens and benefits should be shared within a community to ensure equal respect, fairness, and distribution. In our study, what emerges from participants’ narratives is a definite concern for this type of justice. Women researchers, francophone researchers, early career researchers or researchers belonging to racialized groups all discussed inequities in the distribution of research grants and awards, and the extra work they need to do to somehow prove their worth. These inequities are related to how granting agencies determine which projects will be funded.

These situations make me work 2–3 times harder to prove myself and to show people in power that I have a place as a woman in research (participant 12). Number one: it’s conservative thinking. The older ones control what comes in. So, the younger people have to adapt or they don’t get funded (participant 14).

Whether it is discrimination against stigmatized or marginalized populations or interest in certain hot topics, granting agencies judge research projects according to criteria that are sometimes questionable, according to those participants. Faced with difficulties in obtaining funding for their projects, several strategies – some of which are unethical – are used by researchers in order to cope with these situations.

Sometimes there are subjects that everyone goes to, such as nanotechnology (…), artificial intelligence or (…) the therapeutic use of cannabis, which are very fashionable, and this is sometimes to the detriment of other research that is just as relevant, but which is (…), less sexy, less in the spirit of the time. (…) Sometimes this can lead to inequities in the funding of certain research sectors (participant 9). When we use our funds, we get them given to us, we pretty much say what we think we’re going to do with them, but things change… So, when these things change, sometimes it’s an ethical decision, but by force of circumstances I’m obliged to change the project a little bit (…). Is it ethical to make these changes or should I just let the money go because I couldn’t use it the way I said I would? (participant 3).

Moreover, these distributional injustices are not only linked to social injustices, but also epistemic injustices. Indeed, the way in which research honours and grants are distributed within the academic community depends on the epistemic authority of the researchers, which seems to vary notably according to their language of use, their age or their gender, but also to the research design used (inductive versus deductive), their decision to use (or not use) animals in research, or to conduct activist research.

Epistemic injustices

The philosopher Fricker ( 2007 ) conceptualized the notions of epistemic justice and injustice. Epistemic injustice refers to a form of social inequality that manifests itself in the access, recognition, and production of knowledge as well as the various forms of ignorance that arise (Godrie & Dos Santos, 2017 ). Addressing epistemic injustice necessitates acknowledging the iniquitous wrongs suffered by certain groups of socially stigmatized individuals who have been excluded from knowledge, thus limiting their abilities to interpret, understand, or be heard and account for their experiences. In this study, epistemic injustices were experienced or reported by some participants, notably those related to difficulties in obtaining grants or disseminating research results in one’s native language (i.e., even when there is official bilingualism) or being considered credible and fundable in research when a researcher is a woman or an early career researcher.

I have never sent a grant application to the federal government in English. I have always done it in French, even though I know that when you receive the review, you can see that reviewers didn’t understand anything because they are English-speaking. I didn’t want to get in the boat. It’s not my job to translate, because let’s be honest, I’m not as good in English as I am in French. So, I do them in my first language, which is the language I’m most used to. Then, technically at the administrative level, they are supposed to be able to do it, but they are not good in French. (…) Then, it’s a very big Canadian ethical issue, because basically there are technically two official languages, but Canada is not a bilingual country, it’s a country with two languages, either one or the other. (…) So I was not funded (participant 14).

Researchers who use inductive (or qualitative) methods observed that their projects are sometimes less well reviewed or understood, while research that adopts a hypothetical-deductive (or quantitative) or mixed methods design is better perceived, considered more credible and therefore more easily funded. Of course, regardless of whether a research project adopts an inductive, deductive or mixed-methods scientific design, or whether it deals with qualitative or quantitative data, it must respect a set of scientific criteria. A research project should achieve its objectives by using proven methods that, in the case of inductive research, are credible, reliable, and transferable or, in the case of deductive research, generalizable, objective, representative, and valid (Drolet & Ruest, accepted ). Participants discussing these issues noted that researchers who adopt a qualitative design or those who question the relevance of animal experimentation or are not militant have sometimes been unfairly devalued in their epistemic authority.

There is a mini war between quantitative versus qualitative methods, which I think is silly because science is a method. If you apply the method well, it doesn’t matter what the field is, it’s done well and it’s perfect ” (participant 14). There is also the issue of the place of animals in our lives, because for me, ethics is human ethics, but also animal ethics. Then, there is a great evolution in society on the role of the animal… with the new law that came out in Quebec on the fact that animals are sensitive beings. Then, with the rise of the vegan movement, [we must ask ourselves]: “Do animals still have a place in research?” That’s a big question and it also means that there are practices that need to evolve, but sometimes there’s a disconnection between what’s expected by research ethics boards versus what’s expected in the field (participant 15). In research today, we have more and more research that is militant from an ideological point of view. And so, we have researchers, because they defend values that seem important to them, we’ll talk for example about the fight for equality and social justice. They have pressure to defend a form of moral truth and have the impression that everyone thinks like them or should do so, because they are defending a moral truth. This is something that we see more and more, namely the lack of distance between ideology and science (participant 8).

The combination or intersectionality of these inequities, which seems to be characterized by a lack of ethical support and guidance, is experienced in the highly competitive and individualistic context of research; it provides therefore the perfect recipe for researchers to experience ethical distress.

Ethical distress

The concept of “ethical distress” refers to situations in which people know what they should do to act ethically, but encounter barriers, generally of an organizational or systemic nature, limiting their power to act according to their moral or ethical values (Drolet & Ruest, 2021 ; Jameton, 1984 ; Swisher et al., 2005 ). People then run the risk of finding themselves in a situation where they do not act as their ethical conscience dictates, which in the long term has the potential for exhaustion and distress. The examples reported by participants in this study point to the fact that researchers in particular may be experiencing significant ethical distress. This distress takes place in a context of extreme competition, constant injunctions to perform, and where administrative demands are increasingly numerous and complex to complete, while paradoxically, they lack the time to accomplish all their tasks and responsibilities. Added to these demands are a lack of resources (human, ethical, and financial), a lack of support and recognition, and interpersonal conflicts.

We are in an environment, an elite one, you are part of it, you know what it is: “publish or perish” is the motto. Grants, there is a high level of performance required, to do a lot, to publish, to supervise students, to supervise them well, so yes, it is clear that we are in an environment that is conducive to distress. (…). Overwork, definitely, can lead to distress and eventually to exhaustion. When you know that you should take the time to read the projects before sharing them, but you don’t have the time to do that because you have eight that came in the same day, and then you have others waiting… Then someone rings a bell and says: “ah but there, the protocol is a bit incomplete”. Oh yes, look at that, you’re right. You make up for it, but at the same time it’s a bit because we’re in a hurry, we don’t necessarily have the resources or are able to take the time to do things well from the start, we have to make up for it later. So yes, it can cause distress (participant 9). My organization wanted me to apply in English, and I said no, and everyone in the administration wanted me to apply in English, and I always said no. Some people said: “Listen, I give you the choice”, then some people said: “Listen, I agree with you, but if you’re not [submitting] in English, you won’t be funded”. Then the fact that I am young too, because very often they will look at the CV, they will not look at the project: “ah, his CV is not impressive, we will not finance him”. This is complete nonsense. The person is capable of doing the project, the project is fabulous: we fund the project. So, that happened, organizational barriers: that happened a lot. I was not eligible for Quebec research funds (…). I had big organizational barriers unfortunately (participant 14). At the time of my promotion, some colleagues were not happy with the type of research I was conducting. I learned – you learn this over time when you become friends with people after you enter the university – that someone was against me. He had another candidate in mind, and he was angry about the selection. I was under pressure for the first three years until my contract was renewed. I almost quit at one point, but another colleague told me, “No, stay, nothing will happen”. Nothing happened, but these issues kept me awake at night (participant 16).

This difficult context for many researchers affects not only the conduct of their own research, but also their participation in research. We faced this problem in our study, despite the use of multiple recruitment methods, including more than 200 emails – of which 191 were individual solicitations – sent to potential participants by the two research assistants. REB members and organizations overseeing or supporting research (n = 17) were also approached to see if some of their employees would consider participating. While it was relatively easy to recruit REB members and research ethics experts, our team received a high number of non-responses to emails (n = 175) and some refusals (n = 5), especially by researchers. The reasons given by those who replied were threefold: (a) fear of being easily identified should they take part in the research, (b) being overloaded and lacking time, and (c) the intrusive aspect of certain questions (i.e., “Have you experienced a burnout episode? If so, have you been followed up medically or psychologically?”). In light of these difficulties and concerns, some questions in the socio-demographic questionnaire were removed or modified. Talking about burnout in research remains a taboo for many researchers, which paradoxically can only contribute to the unresolved problem of unhealthy research environments.

Returning to the research question and objective

The question that prompted this research was: What are the ethical issues in research? The purpose of the study was to describe these issues from the perspective of researchers (from different disciplines), research ethics board (REB) members, and research ethics experts. The previous section provided a detailed portrait of the ethical issues experienced by different research stakeholders: these issues are numerous, diverse and were recounted by a range of stakeholders.

The results of the study are generally consistent with the literature. For example, as in our study, the literature discusses the lack of research integrity on the part of some researchers (Al-Hidabi et al., 2018 ; Swazey et al., 1993 ), the numerous conflicts of interest experienced in research (Williams-Jones et al., 2013 ), the issues of recruiting and obtaining the free and informed consent of research participants (Provencher et al., 2014 ; Keogh & Daly, 2009 ), the sometimes difficult relations between researchers and REBs (Drolet & Girard, 2020 ), the epistemological issues experienced in research (Drolet & Ruest, accepted; Sieber 2004 ), as well as the harmful academic context in which researchers evolve, insofar as this is linked to a culture of performance, an overload of work in a context of accountability (Berg & Seeber, 2016 ; FQPPU; 2019 ) that is conducive to ethical distress and even burnout.

If the results of the study are generally in line with those of previous publications on the subject, our findings also bring new elements to the discussion while complementing those already documented. In particular, our results highlight the role of systemic injustices – be they social, distributive or epistemic – within the environments in which research is carried out, at least in Canada. To summarize, the results of our study point to the fact that the relationships between researchers and research participants are likely still to raise worrying ethical issues, despite widely accepted research ethics norms and institutionalized review processes. Further, the context in which research is carried out is not only conducive to breaches of ethical norms and instances of misbehaviour or misconduct, but also likely to be significantly detrimental to the health and well-being of researchers, as well as research assistants. Another element that our research also highlighted is the instrumentalization and even exploitation of students and research assistants, which is another important and worrying social injustice given the inevitable power imbalances between students and researchers.

Moreover, in a context in which ethical issues are often discussed from a micro perspective, our study helps shed light on both the micro- and macro-level ethical dimensions of research (Bronfenbrenner, 1979 ; Glaser 1994 ). However, given that ethical issues in research are not only diverse, but also and above all complex, a broader perspective that encompasses the interplay between the micro and macro dimensions can enable a better understanding of these issues and thereby support the identification of the multiple factors that may be at their origin. Triangulating the perspectives of researchers with those of REB members and research ethics experts enabled us to bring these elements to light, and thus to step back from and critique the way that research is currently conducted. To this end, attention to socio-political elements such as the performance culture in academia or how research funds are distributed, and according to what explicit and implicit criteria, can contribute to identifying the sources of the ethical issues described above.

Contemporary culture characterized by the social acceleration

The German sociologist and philosopher Rosa (2010) argues that late modernity – that is, the period between the 1980s and today – is characterized by a phenomenon of social acceleration that causes various forms of alienation in our relationship to time, space, actions, things, others and ourselves. Rosa distinguishes three types of acceleration: technical acceleration , the acceleration of social changes and the acceleration of the rhythm of life . According to Rosa, social acceleration is the main problem of late modernity, in that the invisible social norm of doing more and faster to supposedly save time operates unchallenged at all levels of individual and collective life, as well as organizational and social life. Although we all, researchers and non-researchers alike, perceive this unspoken pressure to be ever more productive, the process of social acceleration as a new invisible social norm is our blind spot, a kind of tyrant over which we have little control. This conceptualization of the contemporary culture can help us to understand the context in which research is conducted (like other professional practices). To this end, Berg & Seeber ( 2016 ) invite faculty researchers to slow down in order to better reflect and, in the process, take care of their health and their relationships with their colleagues and students. Many women professors encourage their fellow researchers, especially young women researchers, to learn to “say No” in order to protect their mental and physical health and to remain in their academic careers (Allaire & Descheneux, 2022 ). These authors also remind us of the relevance of Kahneman’s ( 2012 ) work which demonstrates that it takes time to think analytically, thoroughly, and logically. Conversely, thinking quickly exposes humans to cognitive and implicit biases that then lead to errors in thinking (e.g., in the analysis of one’s own research data or in the evaluation of grant applications or student curriculum vitae). The phenomenon of social acceleration, which pushes the researcher to think faster and faster, is likely to lead to unethical bad science that can potentially harm humankind. In sum, Rosa’s invitation to contemporary critical theorists to seriously consider the problem of social acceleration is particularly insightful to better understand the ethical issues of research. It provides a lens through which to view the toxic context in which research is conducted today, and one that was shared by the participants in our study.

Clark & Sousa ( 2022 ) note, it is important that other criteria than the volume of researchers’ contributions be valued in research, notably quality. Ultimately, it is the value of the knowledge produced and its influence on the concrete lives of humans and other living beings that matters, not the quantity of publications. An interesting articulation of this view in research governance is seen in a change in practice by Australia’s national health research funder: they now restrict researchers to listing on their curriculum vitae only the top ten publications from the past ten years (rather than all of their publications), in order to evaluate the quality of contributions rather than their quantity. To create environments conducive to the development of quality research, it is important to challenge the phenomenon of social acceleration, which insidiously imposes a quantitative normativity that is both alienating and detrimental to the quality and ethical conduct of research. Based on our experience, we observe that the social norm of acceleration actively disfavours the conduct of empirical research on ethics in research. The fact is that researchers are so busy that it is almost impossible for them to find time to participate in such studies. Further, operating in highly competitive environments, while trying to respect the values and ethical principles of research, creates ethical paradoxes for members of the research community. According to Malherbe ( 1999 ), an ethical paradox is a situation where an individual is confronted by contradictory injunctions (i.e., do more, faster, and better). And eventually, ethical paradoxes lead individuals to situations of distress and burnout, or even to ethical failures (i.e., misbehaviour or misconduct) in the face of the impossibility of responding to contradictory injunctions.

Strengths and Limitations of the study

The triangulation of perceptions and experiences of different actors involved in research is a strength of our study. While there are many studies on the experiences of researchers, rarely are members of REBs and experts in research ethics given the space to discuss their views of what are ethical issues. Giving each of these stakeholders a voice and comparing their different points of view helped shed a different and complementary light on the ethical issues that occur in research. That said, it would have been helpful to also give more space to issues experienced by students or research assistants, as the relationships between researchers and research assistants are at times very worrying, as noted by a participant, and much work still needs to be done to eliminate the exploitative situations that seem to prevail in certain research settings. In addition, no Indigenous or gender diverse researchers participated in the study. Given the ethical issues and systemic injustices that many people from these groups face in Canada (Drolet & Goulet, 2018 ; Nicole & Drolet, in press ), research that gives voice to these researchers would be relevant and contribute to knowledge development, and hopefully also to change in research culture.

Further, although most of the ethical issues discussed in this article may be transferable to the realities experienced by researchers in other countries, the epistemic injustice reported by Francophone researchers who persist in doing research in French in Canada – which is an officially bilingual country but in practice is predominantly English – is likely specific to the Canadian reality. In addition, and as mentioned above, recruitment proved exceedingly difficult, particularly amongst researchers. Despite this difficulty, we obtained data saturation for all but two themes – i.e., exploitation of students and ethical issues of research that uses animals. It follows that further empirical research is needed to improve our understanding of these specific issues, as they may diverge to some extent from those documented here and will likely vary across countries and academic research contexts.

Conclusions

This study, which gave voice to researchers, REB members, and ethics experts, reveals that the ethical issues in research are related to several problematic elements as power imbalances and authority relations. Researchers and research assistants are subject to external pressures that give rise to integrity issues, among others ethical issues. Moreover, the current context of social acceleration influences the definition of the performance indicators valued in academic institutions and has led their members to face several ethical issues, including social, distributive, and epistemic injustices, at different steps of the research process. In this study, ten categories of ethical issues were identified, described and illustrated: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. The triangulation of the perspectives of different members (i.e., researchers from different disciplines, REB members, research ethics experts, and one research assistant) involved in the research process made it possible to lift the veil on some of these ethical issues. Further, it enabled the identification of additional ethical issues, especially systemic injustices experienced in research. To our knowledge, this is the first time that these injustices (social, distributive, and epistemic injustices) have been clearly identified.

Finally, this study brought to the fore several problematic elements that are important to address if the research community is to develop and implement the solutions needed to resolve the diverse and transversal ethical issues that arise in research institutions. A good starting point is the rejection of the corollary norms of “publish or perish” and “do more, faster, and better” and their replacement with “publish quality instead of quantity”, which necessarily entails “do less, slower, and better”. It is also important to pay more attention to the systemic injustices within which researchers work, because these have the potential to significantly harm the academic careers of many researchers, including women researchers, early career researchers, and those belonging to racialized groups as well as the health, well-being, and respect of students and research participants.

Acknowledgements

The team warmly thanks the participants who took part in the research and who made this study possible. Marie-Josée Drolet thanks the five research assistants who participated in the data collection and analysis: Julie-Claude Leblanc, Élie Beauchemin, Pénéloppe Bernier, Louis-Pierre Côté, and Eugénie Rose-Derouin, all students at the Université du Québec à Trois-Rivières (UQTR), two of whom were active in the writing of this article. MJ Drolet and Bryn Williams-Jones also acknowledge the financial contribution of the Social Sciences and Humanities Research Council of Canada (SSHRC), which supported this research through a grant. We would also like to thank the reviewers of this article who helped us improve it, especially by clarifying and refining our ideas.

Competing Interests and Funding

As noted in the Acknowledgements, this research was supported financially by the Social Sciences and Humanities Research Council of Canada (SSHRC).

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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ORIGINAL RESEARCH article

This article is part of the research topic.

Traditional Knowledge in Food Activism and Governance

Indigenous values and perspectives for strengthening food security and sovereignty: Learning from a community-based case study of Miskoziibiing (Bloodvein River First Nation), Manitoba, Canada Provisionally Accepted

1 Other, Canada
2 University of Winnipeg, Canada

The final, formatted version of the article will be published soon.

Despite food security being a significant challenge among many First Nations communities on Turtle Island, there needs to be more empirical, community-based research that underscores the role of traditional food systems and associated values and teachings in Manitoban communities through an Indigenous lens. This research addresses that gap by building upon Indigenous perspectives and knowledges on the status and future directions of food security and sovereignty in Misko-ziibiing (Bloodvein River First Nation). Guided by Indigenous research protocol and using a qualitative research approach, ten in-depth interviews with Bloodvein River First Nation (BVR) and Winnipeg Elders were conducted. Data was also sourced through discussions with local council members, participant observation, and field visits during 2017. The fundamental values and traditional teachings associated with food sovereignty within the community are aligned with the spirit of sharing, including sharing ethics and protocols, social learning within the community, and intergenerational transmission. In recent years, changing environmental, developmental activity, government policies and laws, lifestyle changes and affordability dynamics have continued to threaten the self-determination and food sovereignty of Indigenous peoples in the community. Their perspectives, teachings, and voices are rarely present in any scholarly work. Enhanced intergenerational transmission of traditional teachings, education and language revitalization, and local leadership involvement can strengthen these social and cultural values to enhance Indigenous food security and sovereignty in Miskoziibiing. This research identifies the knowledge and views of Elders, hunters, trappers and fishers, contributing to the current studies associated with traditional food systems and teachings. Strengthening social and cultural traditions and values is vital in working towards Indigenous food governance, sovereignty, and revitalization of their Indigenous food systems.

Keywords: Indigenous values1, social values2, cultural values3, food sovereingty4, food system governance5, Indigenous food security6, traditional foods7, self-determination8

Received: 13 Oct 2023; Accepted: 22 Apr 2024.

Copyright: © 2024 Young, Shukla and Wilson. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: PhD. Shailesh Shukla, University of Winnipeg, Winnipeg, R3B 2E9, Manitoba, Canada

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Published: 20 April 2024

“I am in favour of organ donation, but I feel you should opt-in”—qualitative analysis of the #options 2020 survey free-text responses from NHS staff toward opt-out organ donation legislation in England

Natalie L. Clark 1 ,
Dorothy Coe 2 ,
Natasha Newell 3 ,
Mark N. A. Jones 4 ,
Matthew Robb 4 ,
David Reaich 1 &
Caroline Wroe 2

BMC Medical Ethics volume 25 , Article number: 47 ( 2024 ) Cite this article

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In May 2020, England moved to an opt-out organ donation system, meaning adults are presumed to be an organ donor unless within an excluded group or have opted-out. This change aims to improve organ donation rates following brain or circulatory death. Healthcare staff in the UK are supportive of organ donation, however, both healthcare staff and the public have raised concerns and ethical issues regarding the change. The #options survey was completed by NHS organisations with the aim of understanding awareness and support of the change. This paper analyses the free-text responses from the survey.

The #options survey was registered as a National Institute of Health Research (NIHR) portfolio trial [IRAS 275992] 14 February 2020, and was completed between July and December 2020 across NHS organisations in the North-East and North Cumbria, and North Thames. The survey contained 16 questions of which three were free-text, covering reasons against, additional information required and family discussions. The responses to these questions were thematically analysed.

The #options survey received 5789 responses from NHS staff with 1404 individuals leaving 1657 free-text responses for analysis. The family discussion question elicited the largest number of responses (66%), followed by those against the legislation (19%), and those requiring more information (15%). Analysis revealed six main themes with 22 sub-themes.

Conclusions

The overall #options survey indicated NHS staff are supportive of the legislative change. Analysis of the free-text responses indicates that the views of the NHS staff who are against the change reflect the reasons, misconceptions, and misunderstandings of the public. Additional concerns included the rationale for the change, informed decision making, easy access to information and information regarding organ donation processes. Educational materials and interventions need to be developed for NHS staff to address the concepts of autonomy and consent, organ donation processes, and promote family conversations. Wider public awareness campaigns should continue to promote the positives and refute the negatives thus reducing misconceptions and misunderstandings.

Trial registration

National Institute of Health Research (NIHR) [IRAS 275992].

Peer Review reports

In England May 2020, Max and Kiera’s Law, also known as the Organ Donation (Deemed Consent) Bill, came into effect [ 1 , 2 ]. This means adults in England are now presumed to have agreed to deceased organ donation unless they are within an excluded group, have actively recorded their decision to opt-out of organ donation on the organ donor register (ODR), or nominated an individual to make the decision on their behalf [ 1 , 2 ]. The rationale for the legislative change is to improve the organ donation rates and reduce the shortage of organs available to donate following brain or circulatory death within the UK [ 2 , 3 , 4 ]. This is particularly important considering the growing number of patients awaiting a transplant. Almost 7000 patients were waiting in the UK at the end of March 2023 [ 5 ]. Wales was the first to make the legislative change in December 2015, followed by Scotland in March 2021 and lastly Northern Ireland in June 2023 [ 2 ]. Following the change in Wales, consent rates had increased from 58% in 2015/16 to 77% in 2018/19 [ 6 ], suggesting the opt-out system can significantly increase consent, though it further suggests that it might take a few years to fully appreciate the impact [ 7 , 8 ]. Spain, for example, has had an opt-out legislation since 1979 with increases in organ donation seen 10 years later [ 9 ].

Research, however, has raised concerns from both the public and healthcare staff regarding the move to an opt-out system. These concerns predominantly relate to a loss of freedom and individual choice [ 9 , 10 ], as well as an increased perception of state ownership of organs [ 10 , 11 , 12 ] after death. Healthcare staff additionally fear of a loss of trust and a damaged relationship with their patients [ 9 , 11 ]. These concerns are frequently linked to emotional and attitudinal barriers towards organ donation, understanding and acceptance [ 9 ]. Four often referenced barriers include (1) jinx factor: superstitious beliefs [ 13 , 14 , 15 ]; (2) ick factor: feelings of disgust related to donating [ 13 , 14 , 15 ]; (3) bodily integrity: body must remain intact [ 13 , 14 , 15 ]; (4) medical mistrust: believing doctors will not save the life of someone on the ODR [ 13 , 14 , 15 ]. The latter barrier is mostly reported by the general public in countries with opt-out systems [ 13 , 14 , 16 ] although medical mistrust does feature as a barrier across all organ donation systems. In addition, it is a reported barrier healthcare staff believe will occur in the UK under an opt-out system [ 9 , 16 ].

Deceased donation from ethnic minority groups is low in the UK, with family consent being a predominant barrier in these groups. Consent rates are 35% for ethnic minority eligible donors compared to 65% for white eligible donors [ 5 ]. The reasons for declining commonly relate to being uncertain of the person’s wishes and believing it was against their religious/cultural beliefs. Healthcare staff, particularly in the intensive care setting, have expressed a lack of confidence in communication and supporting ethnic minority groups because of language barriers and differing religious/cultural beliefs to their own [ 17 ]. However, one study has highlighted that generally all religious groups are in favour of organ donation with respect to certain rules and processes. Therefore, increasing knowledge amongst healthcare staff of differing religious beliefs would improve communication and help to sensitively support families during this difficult time [ 18 , 19 ]. However, individually and combined, the attitudinal barriers, concerns towards an opt-out system, and lack of understanding about ethnic minority groups, can have a significant impact within a soft opt-out system whereby the family are still approached about donation and can veto if they wish [ 11 , 12 , 20 ].

The #options survey [ 21 ] was completed online by healthcare staff from National Health Service (NHS) organisations in North-East and North Cumbria (NENC) and North Thames. The aim was to gain an understanding of the awareness and support to the change in legislation. The findings of the survey suggested that NHS staff are more aware, supportive, and proactive about organ donation than the general public, including NHS staff from religious and ethnic minority groups. However, there were still a number who express direct opposition to the change in legislation due to personal choice, views surrounding autonomy, misconceptions or lack of information. This paper will focus on the qualitative analysis of free-text responses to three questions included in the #options survey. It aims to explore the reasons for being against the legislation, what additional information they require to make a decision, and why had they not discussed their organ donation decision with their family. It will further explore a subset analysis of place of work, ethnicity, and misconceptions. The findings will aid suggestions for future educational and engagement work.

Design, sample and setting

The #options survey was approved as a clinical research study through the integrated research application system (IRAS) and registered as a National Institute of Health Research (NIHR) portfolio trial [IRAS 275992]. The survey was based on a previously used public survey [ 22 ] and peer reviewed by NHS Blood and Transplant (NHSBT). The free-text responses used in #options were an addition to the closed questions used in both the #options and the public survey. Due to the COVID-19 pandemic, the start of the survey was delayed by 4 months, opening for responses between July to December 2020. All NHS organisations in the NENC and North Thames were invited to take part. Those that accepted invitations were supplied with a communication package to distribute to their staff. All respondents voluntarily confirmed their agreement to participate in the survey at the beginning. The COnsolidated criteria for REporting Qualitative research (COREQ) checklist was used to guide analysis and reporting of findings [ 23 ], see Supplementary material 1 .

Data collection and analysis

The survey contained 16 questions, including a brief description of the change in legislation. The questions consisted of demographic details (age, sex, ethnicity, religion), place of work, and if the respondent had contact with or worked in an area offering support to donors and recipients. Three of the questions filtered to a free-text response, see Supplementary material 2 . These responses were transferred to Microsoft Excel to be cleaned and thematically analysed by DC. Thematic analysis was chosen to facilitate identification of groups and patterns within large datasets [ 24 ]. Each response was read multiple times to promote familiarity and initially coded. Following coding, they were reviewed to allow areas of interest to form and derive themes and sub-themes. Additional subsets were identified and analysed to better reflect and contrast views. This included, at the request of NHSBT, the theme of ‘misconceptions’. The themes were reviewed within the team (DC, CW, NK, NC, MJ) and shared with NHSBT. Any disagreements were discussed and agreed within the team.

Overall, the #options survey received 5789 responses from NHS staff. The COVID-19 pandemic further impacted on NHS organisations from North Thames to participate, resulting in respondents predominantly being from NENC (86%). Of the respondents, 1404 individuals (24%) left 1657 free-text responses for analysis. The family discussion question elicited the largest number of responses, accounting for 66% of the responses ( n = 1088), followed by against the legislation at 19% ( n = 316) and more information needed at 15% ( n = 253). The responses to the against legislation question provided the richest data as they contained the most information. Across the three questions, there were six main themes and 22 sub-themes, see Table 1 . The large number of free-text responses illustrate the multifaceted nature of individuals views with many quotes containing overlap between themes and sub-themes.

Respondent characteristics

In comparison to the whole #options survey respondents, the free-text response group contained proportionally more males (21% vs 27%), less females (78% vs 72%), and marginally more 18–24year-olds (7% vs 8%), respectively. There were 5% more 55 + year olds in the free-text group, however all other age groups were between 2–3% lower when compared to the whole group. Additionally, the free-text group were more ethnically diverse than the whole group (6.9% vs 15.4%), with all named religions also having a higher representation (3.9% vs 7.3%), respectively.

Question one: I am against the legislation – Can you help us understand why you are against this legislation?

Of the three questions, this elicited the largest number of responses from males ( n = 94, 30%), those aged over 55 years ( n = 103, 33%), and ethnic minority responders ( n = 79, 25%). Subset analysis of place of employment indicates 27% were from the transplant centre ( n = 84), 8% were from the mental health trust ( n = 26), and 4% from the ambulance trust ( n = 14). Thematic analysis uncovered four main themes and 12 sub-themes from the responses, with the predominant theme being a perceived loss of autonomy.

Theme one: loss of autonomy

Respondents’ reasons for a loss of autonomy were categorised into four sub-themes. Firstly, calling into question the nature of informed consent and secondly, peoples’ awareness of the legislative change. One respondent stated individuals need to be “fully aware and informed” [R2943] in order to have consented to organ donation. However, one respondent stated that they believe individuals have “not [been] informed well” [R930] and thus “if people are not aware of it, how are they making a choice on what happens to their organs” [R1166] . It was suggested that awareness of the change may have “been overshadowed by COVID” [R4119] .

Furthermore, there was concerns regarding the means to record an opt-out decision, specifically to those that are “not tech savvy” [R167] , “homeless” [R5721] , “vulnerable” [R4553] , and “elderly” [R2155] . Therefore, removing that individual’s right to record their decision due to being at a disadvantage.

Finally, respondents expressed concerns of a move to an authoritarian model of State ownership of organs. This elicited strong, negative reactions from individuals under the belief the State would own and “harvest” a person’s organs under a deemed consent approach, with some removing themselves as a donor consequently, “I am furious that the Government has decided that my organs are theirs to assign. It is MY gift to give, not theirs. I have now removed myself as a long-standing organ donor.” [R593] .

Theme two: consequences

Following respondents stating their reason for being against the legislative change, they discussed further what they believed to be the consequences of an opt-out legislation, with a focus on trust. Respondents cited a lack of trust towards the system, “I have no Trust in the UK government” [R5374] , with some surprisingly citing a lack of trust towards healthcare professionals, “Don’t trust doctors in regard to organ donation” [R3010], as well as a fear of eroding trust with the general public, “This brings the NHS Organ Donation directly into dispute with the public.” [R1237]. Respondents additionally believed the legislative change would lead to an increase in mistakes i.e., organ’s being removed against a person’s wishes by presuming, “not convinced that errors won't be made in my notifying my objection and that this won't be dealt with or handed over correctly” [R3018]. Finally, it is believed this change would also lead to, “additional upset” [R587], for already grieving families.

Theme three: legislation

Respondents were additionally against the legislation itself as they believed it lacked an evidence-base to prove it is successful at increasing the numbers of organs donated. As well as this, respondents perceived the legislation as one that removed the donor’s choice as to which organs they want to donate, some with a religious attribute “I don't mind donating but would like choice of what I like to i.e., not my cornea as for after life I want to see where I am going.” [R5274].

Theme four: religion and culture

Religion and culture was another common theme with sub-themes relating to maintaining bodily integrity following death and the lack of clarity around the definition of brain death. Many others stated that organ donation is against their religion or, were “unsure whether organ donation is permissible” [R1067].

Question two: I need more information to decide—What information would you like to help you decide?

This question elicited the most responses from females ( n = 188, 74%), those aged over 55 years ( n = 80, 32%), with 19% being from ethnic minority groups ( n = 49). Subset analysis of place of employment indicates 18% were from the transplant centre ( n = 46), 8% were from the mental health trust ( n = 18), and 9% from the ambulance trust ( n = 23). Thematic analysis uncovered a main theme of “everything” . There were many responses that did not specify what information was required, but indicated that more general information on organ donation was required, within this there were five sub-themes.

Sub-themes:

The first sub-theme identified a request for information around the influence a family has on the decision to donate and the information that will be provided to families. This included providing “emotional wellbeing” [R162] support, and information on whether families can “appeal against the decision” [R539] or “be consulted” [R923] following their loved one’s death. This was mainly requested by those employed by transplant centres.

The second request was for information on the “process involved after death for organ retrieval” [R171] , predominantly by ethnic minority groups and those employed by the mental health trusts, with specific requests on confirming eligibility. Other examples of requested information on the process and pathway included “how the organs will be used” [R1086] , “what will be donated” [R1629] , and “who benefits from them” [R3730] .

The third request was information regarding the publicity strategy to raise awareness of the legislative change. Many of the respondents stated they did not think there was enough “coverage in the media” [R3668]. Additional considerations of public dissemination were to ensure it was an “ easy read update” [R137 3 ] , specifically for “the elderly or those with poor understanding of English who may struggled with the process” [R1676] .

The fourth request was information around the systems in place to record a decision. There were additional requests for the opt-out processes if someone was within the excluded group and “what safeguards are in place” [R3777], as well as what if individuals change their mind and the ease of recording this new decision.

Finally, and similarly to the first question, the fifth request was information for an evidence-base. Respondents stated that they, “would like to know the reasons behind this change” [R3965] , believing that if they had a greater understanding then this might increase their support towards the legislative change.

Question three: Have you discussed your decision with a family member? If no, can you help us understand what has stopped you discussing this with your family?

The free-text responses to analyse were from those who responded “No” to, “Have you discussed your decision with a family member?”. This received 1430 responses with females ( n = 1025, 27%) predominantly answering “No”. However, not everyone left a free-text response, leaving 1088 comments for analysis. These were predominantly made by those aged over 55 years ( n = 268, 24%), with 5% being from ethnic minority groups ( n = 49). Subset analysis of the 1088 responses regarding place of employment indicated 14% were from the transplant centre ( n = 147), 7% were from the mental health trust ( n = 78), and 9% from the ambulance trust ( n = 96). The analysis uncovered a main theme of priority and relevance made up of five sub-themes.

The first sub-theme identified one reason to be that it was their “individual decision” [R3] and there would be “nothing to be gained” [R248] from a discussion. Some respondents stated that despite a lack of discussion, their family members would assume their wishes in relation to organ donation and support these, “I imagine they are all of the same mindset” [R4470]. However, some stated their reasons to be because they “don’t have a family” [R1127] to discuss this with or have “young ones whose understanding is limited about organ donation” [R356] . Positively, there were several respondents who suggested the question had acted as a prompt to speak to their family.

Another reason stated by respondents was that they found the topic to be too difficult to discuss due to “recent bereavements” [R444], “current environment” [R441] , and “a reluctance to address death” [R4486] . As evident in the latter quote, many respondents viewed discussions around death and dying as a “taboo subject” [R3285] , increasing the avoidance of having such conversations.

Finally, the fifth reason was that several respondents “had not made any decision yet” [R2478] . One respondent wanted to ensure they had reviewed all available information before deciding and having a well-informed discussion with them.

Misconceptions

A further subset analysis of responses coded as misconceptions was reviewed at the request of NHSBT, with interest in whether these occurred from healthcare staff working with donors and recipients. Misconceptions were identified across the three questions, with misconceptions accounting for 24% of the responses to the against the legislation question. Responses used emotive, powerful words with suggestions of State ownership of organs, abuse of the system to procure organs, change in treatment of donors to hasten death, religious and cultural objections, and recipient worthiness.

I worked in organ retrieval theatre during my career and I was uncomfortable with the way the operations were performed during this period. Although the 'brain dead' tests had been completed prior to the operation the vital signs of the patient often reflected that the patient was responding to painful stimuli. Sometimes the patient was not given the usual analgesia that is often given during routine operations. This made me rethink organ donation therefore I am uncomfortable with this. I always carried a donation card prior to my experience but subsequently would not wish to donate. This may be a personal feeling but that is my experience. [R660].

I think that this is a choice that should be left to individuals and families to make. After many years in nursing lots of it spent with transplant patients not all recipients embrace a 'healthy lifestyle' post-transplant with many going back to old lifestyle choices which made a transplant necessary in the first place. [R867].

Additional comments suggested certain medical conditions and advancing age precludes donation and that the ability to choose which organs to donate had been removed.

Most of them will be of no use as I have had a heart attack, I smoke and have Type 2 diabetes. [R595]

Further analysis indicated that 27% ( n = 24) of these comments were made by individuals who worked with or in an area that supported donors and recipients.

In summary, this qualitative paper has evidenced that the ability to make an autonomous informed decision is foremost in the respondent’s thoughts regarding an opt-out system. This has been commonly cited as a reason throughout the literature by those against an opt-out system [ 9 , 10 , 25 , 26 ]. The loss of that ability was the primary reason for respondents being against the change in legislation with the notion that the decision is a personal choice cited as a reason for lack of discussion with family members. Respondents stated that the ability to make autonomous decisions needs to be adequately supported by evidence-based information that is accessible to all. If the latter is unavailable, they expressed concern for negative consequences. This includes an increase in the perceived belief of the potential for mistakes and abuse of the system, as well as family distress and loss of trust in the donation system and the staff who work in it, as supported by previous literature [ 9 , 11 ].

Our findings further coincide with that of previous literature, highlighting views suggesting that the opt-out system is a move towards an authoritarian system, illustrating the commercialisation of organs, and a system that is open to abuse and mistakes [ 10 , 11 , 12 , 27 , 28 , 29 ]. Healthcare staff require reassurance that the population, specifically the hard-to-reach groups like the elderly and homeless, have access to information and systems in order to be able to make an informed decision [ 30 , 31 ]. Whilst the findings from the overall #options survey demonstrated awareness is higher in NHS staff, there was a significant narrative in the free-text response regarding a lack of awareness and a concern the general public must also lack the same awareness of the system change. Some responses also reflected medical mistrust concerns of the general public [ 13 , 14 , 16 ] as well as expressing a fear of losing trust with the public [ 9 , 11 , 16 ], as found within previous work. Additional research articles raising awareness of the opt-out system in England suggest that despite publicising the change with carefully crafted positive messaging, negative views and attitudes are likely to influence interpretation leading to an increase in misinformation [ 28 ]. Targeted, evidence-based interventions and campaigns that address misinformation, particularly in sub-groups like ethnic minorities, is likely to provide reassurance to NHS staff and the general public, as well as providing reliable resources of information [ 28 ].

Respondents also requested more detailed information about the process of organ donation. The disparity of information and the knowledge of the processes of donation includes eligibility criteria, perceived religious and cultural exclusions, practical processes of brain and circulatory death, and subsequent organ retrieval. As well as, most importantly, more information on the care provided to the donor before and after the donation procedure. The gap of available factual knowledge is instead filled by misconceptions and misunderstandings which is perpetuated until new information and knowledge is acquired. It may also be attributed to the increased awareness of ethical and regulatory processes. These attitudes and views illustrate the complexity of opinions associated with religion, culture, medical mistrust, and ignorance of the donation processes [ 11 , 15 , 32 ]. There is evidently a need for healthcare staff to display openness and transparency about the processes of organ donation and how this is completed, particularly with the donor’s family. It further reinforces the need to increase the knowledge of differing religious and cultural beliefs to support conversations with families [ 18 , 19 ].

Both healthcare staff and the public would benefit from educational materials and interventions to address attitudes towards organ donation [ 19 , 28 , 33 ]. This would assist in correcting misconceptions and misunderstandings held by NHS staff, specifically those who support and work with organ donors and recipients. Previous work illustrates support for donation being higher in intensivists, recommending educational programmes to increase awareness across all healthcare staff [ 34 ]. The quantitative and qualitative findings of the #options survey would support this recommendation, adding that interventions need to be delivered by those working within organ donation and transplantation. This would build on the community work being conducted by NHSBT, hopefully leading NHS staff to become transplant ambassadors within their local communities.

A further finding was that of confusion and misunderstanding surrounding the role of the family, a finding also supported by the literature [ 11 ]. It was suggested that family distress would be heightened, and families would override the premise of opt-out. Literature also supports this could be further impacted if the family holds negative attitudes towards organ donation [ 20 ]. The uncertainty of the donors’ wishes was the most common reason for refusing from ethnic minority groups [ 35 ], further highlighting the need for family discussions. Without this, families feel they are left with no prior indication so they opt-out as a precaution. Making an opt-in decision known can aid the grieving process as the family takes comfort in knowing they are fulfilling the donors wishes [ 26 ] and reduces the likelihood of refusal due to uncertainty about their wishes [ 36 ]. The ambiguity around the role of the family, coupled with not explicitly stating a choice via the organ donor register or discussions with family can make it problematic for next of kin and NHS staff.

Limitations

It is acknowledged that the findings of this study could have been influenced by the COVID-19 pandemic beyond the changes to the research delivery plan including a shift in critical care priorities, initial increase of false information circulating social media, delayed specialist nurse training, and removal of planned public campaigns [ 37 , 38 ]. The degree of the impact is unknown and supports the view that ongoing research into healthcare staff attitudes is required. Additionally, the survey did not collect job titles and is therefore limited to combining all healthcare staff responses. It is understood not all staff, such as those working in mental health, would know in depth details of organ donation and legislation, but it is expected that their level of knowledge would be greater than that of the general public.

The quantitative analysis [ 21 ] of the #options survey showed that overall NHS staff are well informed and more supportive of the change in legislation when compared to the general public. This qualitative analysis of the free-text responses provides a greater insight into the views of the healthcare staff who against the change. The reasons given reflect the known misconceptions and misunderstandings held by the general public and evidenced within the literature [ 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 ]. There are further concerns about the rationale for the change, the nature of the informed decision making, ease of access to information including information regarding organ donation processes. We therefore propose that educational materials and interventions for NHS staff are developed to address the concepts of autonomy and consent, are transparent about organ donation processes, and address the need for conversations with family. Regarding the wider public awareness campaigns, there is a continued need to promote the positives and refute the negatives to fill the knowledge gap with evidence-based information [ 39 ] and reduce misconceptions and misunderstandings.

Availability of data and materials

The datasets analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Coronavirus Disease 2019

Integrated research application system

North-East and North Cumbria

National Health Service

National Health Service Blood and Transplant

National Institute of Health Research

Organ donor register

United Kingdom

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Acknowledgements

With thanks to the NHSBT legislation implementation team for peer review of the questionnaire and the Kantar population survey data.

Funding for the project was gained from the Northern Counties Kidney Research Fund. Grant number 16.01.

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NC, DC, and CW were responsible for the drafting and revising of the manuscript. NN, MJ, MR, DR, and CW were responsible for the design of the study. DC completed the qualitative analysis. NC, DC, NN, MJ, MR, DR, and CW read and approved the final manuscript.

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Clark, N.L., Coe, D., Newell, N. et al. “I am in favour of organ donation, but I feel you should opt-in”—qualitative analysis of the #options 2020 survey free-text responses from NHS staff toward opt-out organ donation legislation in England. BMC Med Ethics 25 , 47 (2024). https://doi.org/10.1186/s12910-024-01048-6

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Assessing the Variability in Interpretation of the Catholic Directives Pertaining to Reproductive Health Services: An Exploratory Qualitative Study of Two Hospitals on the American East Coast

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Michelle N. Blomgren ORCID: orcid.org/0000-0002-9236-2468 1 , 2 &
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The ethics in Catholic hospitals are guided by the Ethical and Religious Directives for Catholic Health Care Services, which provide direction on many topics, including family planning. Previous research has demonstrated there is variability in the availability of prohibited family planning services at Catholic hospitals. This study aims to research a potential source of variability in interpretation and application of the directives through interviewing ethics committee members. Participants were recruited from two different hospitals on the east coast with a total sample size of eight. Ethics committee members were asked questions regarding their personal approach to ethics, their hospital’s approach to ethics, and the permissibility of specific family planning methods at their hospital. Most ethics committee members stated that the Catholic faith and/or directives were important in their hospitals’ approach to ethics. Most participants stated that they had instances in which their personal approach to ethics conflicted with their hospital’s approach, citing women’s health and end-of-life care as common causes of conflict. All but one ethics committee member stated that hormonal contraception was forbidden under the directives; however, many members stated that this was either a gray area or permissible under certain circumstances. Reproductive health issues rarely came before the ethics committee at either site with one participant referring to them as “black and white issues.” This research suggests that ethics committee members did not see the directives governing family planning services to be ambiguous. However, given the low frequency in which these issues come to the attention of the ethics committee, it is difficult to determine whether the opinions expressed by our participants contribute to the variability between Catholic hospitals when it comes to reproductive healthcare provision. An interesting topic for future research would be interviewing executives at Catholic hospitals to determine where this variability arises.

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All authors contributed to study conception and design. Data collection was performed by Michelle Blomgren MD. Data Analysis was performed by Michelle Blomgren MD with assistance of Emily McCave PhD. Manuscript was written by Michelle Blomgren MD. The final manuscript was approved by all authors.

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Blomgren, M.N., McCave, E. Assessing the Variability in Interpretation of the Catholic Directives Pertaining to Reproductive Health Services: An Exploratory Qualitative Study of Two Hospitals on the American East Coast. J Relig Health (2024). https://doi.org/10.1007/s10943-024-02043-2

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Ethics in Qualitative Research Controversies and Contexts

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Ethical considerations associated with Qualitative Research methods

Chapter 7. Ethics

Introduction

Being an Ethical Researcher

Part 1: Ethical Issues throughout the Course of the Study

Data Collection

Part 2: Ethical Scenarios

Scenario 1: The Glass Ceiling

Scenario 2: #BlackLivesMatter

Scenario 3: The Unhoused

Scenario 4: Studying Upside Down

Scenario 5: Political Deception

Scenario 6: What Do Your Friends Say About You?

Further Readings

The Top 5 Ethical Considerations in Qualitative Research

Informed Consent

Confidentiality and Privacy

Respect for Participants

Data Collection and Analysis

Use of Findings

Related Insights

Ethics with More-Than-Human Participants Practice As Research

Top Podcasts In Education

Ethical Issues in Research: Perceptions of Researchers, Research Ethics Board Members and Research Ethics Experts

Eugénie Rose-Derouin

Julie-Claude Leblanc

Introduction

Research Methods

Ethical considerations

Sampling and recruitment

Data Collection

Data Analysis

Participants

Ethical issues

Research Integrity

Conflict of interest

Respect for research participants

Lack of Supervision and Power Imbalances

Individualism and performance

Inadequate ethical Guidance

Social Injustices

Distributive Injustices

Epistemic injustices

Ethical distress

Returning to the research question and objective

Contemporary culture characterized by the social acceleration

Strengths and Limitations of the study

Conclusions

Acknowledgements

Competing Interests and Funding

ORIGINAL RESEARCH article

Indigenous values and perspectives for strengthening food security and sovereignty: Learning from a community-based case study of Miskoziibiing (Bloodvein River First Nation), Manitoba, Canada Provisionally Accepted

People also looked at

“I am in favour of organ donation, but I feel you should opt-in”—qualitative analysis of the #options 2020 survey free-text responses from NHS staff toward opt-out organ donation legislation in England

Conclusions

Trial registration

Design, sample and setting

Data collection and analysis

Respondent characteristics

Question one: I am against the legislation – Can you help us understand why you are against this legislation?

Theme one: loss of autonomy

Theme two: consequences

Theme three: legislation

Theme four: religion and culture

Question two: I need more information to decide—What information would you like to help you decide?

Sub-themes:

Question three: Have you discussed your decision with a family member? If no, can you help us understand what has stopped you discussing this with your family?

Misconceptions

Limitations

Availability of data and materials

Abbreviations

Acknowledgements

Author information

Contributions

Corresponding author

Ethics declarations