experience
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.
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.
Ethical issues in research according to the participants
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.
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.
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
This page provides a comprehensive list of ethics research paper topics , aiming to guide students through the intricate labyrinth of moral and ethical discussions. Curated meticulously by iResearchNet, the guide not only presents diverse topics across various ethical domains but also imparts invaluable insights on choosing the ideal topic and formulating a compelling research paper. For both newcomers and those well-acquainted with ethics research, this resource stands as a beacon, illuminating the path to academic success.
The vast field of ethics, deeply intertwined with the human experience, requires continual exploration and understanding. For students embarking on academic pursuits, identifying the right ethics research paper topics becomes paramount. Not only does it set the stage for meaningful inquiry, but it also determines the depth and breadth of the discourse. The study of ethics challenges individuals to dissect, question, and offer insights into the moral compass that guides societies. This extensive list has been curated to provide students with a wide array of ethics research paper topics, covering various domains, each reflecting the multi-faceted nature of ethical discussions.
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1. Medical Ethics :
2. Business Ethics :
3. Environmental Ethics :
4. Technological Ethics :
5. Digital & Media Ethics :
6. Social & Cultural Ethics :
7. Educational Ethics :
8. Political & Governance Ethics :
9. Sports & Recreation Ethics :
10. Art & Aesthetics Ethics :
Within the broad spectrum of ethics research paper topics, lie endless opportunities to engage with pressing questions, challenge established norms, and contribute to the evolving ethical paradigms of the 21st century. As society grapples with new technologies, shifting global dynamics, and unprecedented challenges, the importance of ethical exploration cannot be overstated. We invite every student to dive deep into this list, to find their niche within the vast expanse of ethical topics. By selecting the right ethics research paper topics, they can position themselves at the forefront of dialogues that have the power to reshape our world’s moral landscape.
Introduction to Ethics as a Discipline At the heart of human existence lies the perennial question: What ought we to do? Ethics, a sophisticated branch of philosophy, is dedicated to answering this question, probing deep into the realms of right and wrong, duty, and responsibility. As societies, technologies, and cultures evolve, the exploration of ethical tenets has expanded, encompassing various domains and scenarios, from everyday life choices to complex geopolitical decisions.
Historical Context of Ethics Tracing back to antiquity, the ethical compass was set by seminal thinkers. Ancient Greeks, through the philosophical musings of Socrates, Plato, and Aristotle, dissected concepts of virtue, the purpose of life, and societal duties. Concurrently, in the East, doctrines of Confucianism, Buddhism, and Hinduism were offering profound insights into ethical living, highlighting righteousness, duty, and the cosmic order. These foundational thoughts provided the architecture for successive generations to build upon, creating a rich tapestry of ethical frameworks.
Evolution of Ethical Considerations The journey from medieval to modern times witnessed a fascinating evolution of ethics. The Middle Ages were dominated by religious ethics, where moral codes were often derived from religious scriptures and divine interventions. Philosophers like Thomas Aquinas sought to reconcile reason with faith. The Renaissance and Enlightenment periods championed human reason, leading to secular ethical theories. Thinkers like Immanuel Kant, Jeremy Bentham, and John Stuart Mill introduced deontological and utilitarian perspectives, respectively. Fast-forwarding to the contemporary era, we’re in an age that grapples with challenges birthed by rapid technological advancements, sociopolitical changes, and a globalized world, each demanding nuanced ethical considerations.
Diverse Areas of Study within Ethics Ethics now sprawls across various disciplines, each reflecting the pressing concerns of the age. Medical ethics, for instance, navigates the intricate maze of patient rights, bioengineering, and health equity. Business ethics is centered around corporate governance, sustainability, consumer rights, and corporate social responsibilities. Environmental ethics is a testimony to our growing realization of Earth’s fragility, prompting discourses on conservation, animal rights, and sustainable development. These subdivisions elucidate the vastness and depth of the ethical universe, emphasizing its applicability in multifarious sectors.
Relevance in Today’s Interconnected World Today, the tapestry of global interconnectivity has heightened the importance of ethical considerations. Information dissemination is rapid; societies are interwoven in complex ways, where a decision in one corner of the world can reverberate globally. This hyperconnected ecosystem underscores the pivotal role of ethics, be it in global trade, international diplomacy, technological advancements, or individual behavioral patterns.
Case Studies Illustrating Depth and Breadth of Ethical Inquiries :
The Global Impact of Ethics Research Ethical research isn’t a mere academic endeavor; its ramifications ripple through the global fabric. Policies, laws, international treaties, corporate strategies, and even grassroots movements are often anchored in rigorous ethical discussions. For instance, international climate accords are informed by environmental ethics, dictating the shared responsibilities of nations. Similarly, discussions on data privacy regulations are imbued with digital ethics, reflecting the collective consensus on individual rights in the digital age.
Conclusion Stressed on the Limitless Possibilities of Research in Ethics Ethics, with its expansive history and multifaceted nature, continues to be a beacon, illuminating the intricacies of human actions and intentions. The extensive array of “ethics research paper topics” is testament to its sprawling scope, touching upon nearly every facet of human existence. As we stand at the precipice of monumental global changes, the canvas of ethical research beckons scholars, students, and thinkers to engage, question, and sculpt the moral landscape of the future. With every ethical inquiry, we edge closer to understanding the complexities of the human psyche, societal constructs, and the broader universe, unveiling limitless possibilities.
Embarking on a scholarly voyage begins with a crucial decision – choosing the right topic. In the vast domain of academic research, the topic serves as the foundation stone, shaping the trajectory of the entire study. Especially when navigating the intricate waters of “ethics research paper topics,” this choice is paramount. A judiciously chosen topic can serve as a mirror, reflecting societal concerns, personal beliefs, and scholarly gaps, ensuring the research not only informs but also inspires.
The odyssey of crafting a research paper is both challenging and rewarding, with the initial choice of topic setting the stage for what follows. While there’s a myriad of “ethics research paper topics” to delve into, ensuring alignment with personal interest, societal relevance, and scholarly depth can transform your research from mundane to monumental. As budding scholars, harnessing the power of a well-chosen topic is the first step in leaving an indelible imprint in the annals of academic and societal discourse.
Writing an ethics research paper is an intricate blend of philosophy, societal observations, and rigorous academic inquiry. Unlike many other disciplines where facts and figures predominantly steer the content, ethics brings in the added layer of moral scrutiny and philosophical debate. Thus, crafting a paper in this domain demands not only academic rigor but also a thoughtful understanding of the ever-evolving moral compass of society.
Embarking on the journey of writing an ethics research paper is a commendable endeavor. It’s a pursuit that demands meticulous research, unbiased representation, and deep philosophical introspection. While the path might be laden with challenges, the rewards – in the form of enriched understandings, ignited debates, and potential societal impacts – are profound. As scholars delving into the realm of ethics, let’s strive to craft papers that not only dissect ethical quandaries but also illuminate paths towards a more reflective and just society.
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Ethics is a branch of study in philosophy that studies the concept of morality—what is good or bad, what is acceptable or unacceptable. It’s a philosophical theory that looks into moral rules and codes, principles, value systems, and other related concepts.
In academia, an ethical theory is used as one of the analytical tools in drawing analysis on several socio-cultural topics. Ethics can be applied to any particular subject matter in human society. And, on this, so many compelling, controversial or interesting ethical topics for academic essays and research papers have continued to spring up.
For students writing either an essay or a research paper on ethics, there are some relevant things to note about a good essay/research topic and writing a dissertation. They include:
Brainstorm on different topics Always go for a topic you are familiar with Choose a topic that has enough “flesh”. This is important as interesting topics will help you develop your essay/research Define your subject of interest. It makes the writing easier Properly researching for topics that serve contemporary social relevance Outlining is important for your research topic
What following some of these processes does for your essay/research/thesis is that it enriches your work and affords you the ability to communicate ideas clearly to readers. Here are some topics in ethics you can use for your essay/research.
Writing a paper on ethics makes for an interesting writing experience because they usually require that the writer make a case for a particular subject based on whether the subject is right or wrong. There are so many ethical topics for papers. As a student, there are several ethical questions to debate, and you can choose to model your topic using some of these samples:
As ethics deals with the debate on morals, one of the ways topics on ethics manifests is in the subject of dilemma. Topics like this focus on trying to find a suitable justification for one idea over another. There are several ethics topics to write about on this subject. Some of them include:
One important thing to note about ethical topics is that they touch across so many different subjects. As a college student preparing to write an essay on ethics, rest assured as there are so many ethics ideas to write about. Here are some ethical topics to write about:
The best part about writing an ethical essay is that it is about anything that is of interest. An important aspect of the ethical argument topic is that it is supported with evidence. There are so many ethical topics to write about that fall within this category, and they include:
Just like the argumentative ethics topic, a debate topic on ethics centers majorly on choosing a part to argue for or against. This argument also is wrapped with evidence to support it. Your ethic topics can be on any subject. You can choose moral topics or any other topic with relevance. Here are some lists of ethical debate topics anyone can write on:
Writing either a thesis or a dissertation is a necessary part of academia. As a university student, you can’t graduate from only writing essays withiut writing your graduating thesis. There are so many areas your research paper about ethics can focus on. Here is a list of ethical topics:
Primarily, ethics asks and answers the question of wrong or good. There are so many social issues that will make for good ethical questions for discussion. Here is a list of ethical questions for students to form insights from:
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International Journal of Scientific and Research Publications (IJSRP)
Sofiah Samsudin
International Res Jour Managt Socio Human
Research is of a very significant importance to the individuals, society, different nationalities and also up to the international platform. It exercises a considerable power at all these levels. Therefore, it is extremely essential that the research is undertaken in certain methods which are ethically very sound. The persons who are participating in the research as the informants or otherwise, must be treated with great respect. Researchers must try to produce good consequences and if at all there are any controversial consequences, they should strictly be limited to certain conditions of acceptability. The unfair practices to design and implement the research projects must be strictly avoided. The concerned people are expected to follow the recognized norms such as the proper behavior, openness, honesty and integrity towards the general public, colleagues, participants, national or international delegates, faculties, managers and the organizers of the related events.
Advanced Research
David Priede, MIS, Ph.D.
Scientific research must be conducted in accordance with ethical principles. This paper discusses how to ensure that all aspects of a doctoral research, from literature review to conducting research, to writing the dissertation manuscript will be done with care and integrity and will meet the ethical standards of scientific research. This paper will also justify all the steps a researcher will take to ensure the ethical integrity of a dissertation project and not simply describe standard practices. Furthermore, the paper also shows that a researcher must have his / her own clear set of ethical principles, and know how to apply them to their work as they move through the process of writing a thesis.
Yasir Arafat
Mokhamad Anwar
Research Ethics has become one of the most important issues in research activities. Many professional associations, government agencies, and universities have approved specific codes, rules, and policies relating to research ethics. Nuremberg Code 1947 has been a prominent reference for being adopted by organizations in conducting research ethics. This paper tries to explain what research ethics means, how important ethics in research activities, and some ethics principles which many experts shed light on and currently prevail in many organizations including universities. In the end of this paper, it is revealed some of those principles that could be more appropriate to be paid more attention related with the qualitative and quantitative methods employed.
Bibek Dahal
Research ethics is concerned with ethical issues that can arise while conducting research. Social science research entails a combination of three equal entities: process, context and human agency. In each study, these entities demand rich interaction with each other. Generally, research ethics questions the interrelation between the research context and the human involvement established within that context. The research context and interaction between researcher and research participants lead to variations in the construction of knowledge, while research ethics plays a major role throughout all undertakings. In this narrative review paper, I have critically reflected my arguments on behalf of research ethics as a context-specific issue. I argued that the one-size-fits-all approach of research ethics is not viable by presenting ethical practices from the South Asian perspective. The paper is organized in three specific sections-ethical theories, research ethics and its contextual practices. Research ethics is very much a private affair and directly linked to the personal outlook of the researcher towards others. The ethical issue in research is not generic, but specific to the research context, i.e. the context of the research determines what form of behaviour is ethical and what is not. I explore the idea that the South Asian context may have its own system to conduct research ethically, as in euro-western and indigenous systems.
Journal of Business Systems, Governance & Ethics
Anona Armstrong
Outlines. Critical Practice Studies
Janne Madsen
SciDoc Publishers
International Journal of Dentistry and Oral Science (IJDOS)
Introduction: The research ethics provides guidelines to apply moral regulations and professional codes of conduct in the various steps of research. The research ethics plays a very vital role in the collection, analysis, reporting, and publication of details about research subjects, in particular active acceptance of participant’s right to privacy, confidentiality and the informed consent of the participant. Aims: To assess the Knowledge, awareness and attitudes about research ethics among the faculty and students of medical and dental colleges and the requirement for a regular teaching about research ethics among the faculty and students of medical and dental colleges. Materials & Methods: A cross-sectional study was conducted by assessing the responses to 39 selected basic questions regarding Knowledge, awareness and attitudes about research ethics among a total of 415 faculty members and post graduate students of the medical and dental institutions in Karnataka. The questionnaire was made into 5 categories. Chi-square tests was used to determine, in bivariate analyses, the association of each of the independent variables like their speciality, their academic position, prior ethics training, and their prior involvement with research with each of the main outcome of interest. The students t-test was done to assess the respondents scores on the 5-point Likert scale ranging from 1 to 5 (1-strongly disagree, 2-disagree, 3-not sure, 4-agree and 5-strongly agree). The average of their scores were compared among the various variable like their specialty and academic position by using the ANOVA test. Results: A total of 415 responses were obtained from the participants of the study. Out of this we had 273 respondents as female and 142 respondents as male. Among these 225 respondents were from the medical speciality and 190 from the dental speciality. The P value was kept at 0.05 for this study. Conclusion: The participants of the questionnaire survey showed that the institutional ethics committees would be very useful for promoting health research and are imperative for appraisal of the health research projects.The majority of the respondents agreed that they were well aware of the ethical guidelines governing the human research, but when we assess the respondent’s knowledge and attitudes towards research ethics there seems to be a lacuna in complete awareness and knowledge of research ethics. The results of the study also helped us to assess the requirement for a regular teaching about research ethics among the faculty and students of medical and dental colleges.
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Sapienza: International Journal of Interdisciplinary Studies
kirk sonny gil heruela
Muluken Gebeyehu
bharti kaushik , Richa Prasad
Shane Connelly
udo schuklenk
Stephen I Akaranga
Cogent Sciences
Woldu G Moges
Etică şi deontologie
Cristina Mihaela Salca Rotaru
Dirce Bellezi Guilhem
Postgraduate Study in South Africa- Surviving and Succeeding
S'mangele Mayisela
Journal of Humanities and Social Sciences Studies (JHSSS)
Nkongho A Arrey-Ndip
Leyla Şenol
Criminal Behaviour and Mental Health
Tim Exworthy
Zenodo (CERN European Organization for Nuclear Research)
Rekha Chavhan
International Journal of Academic Research in Accounting, Finance and Management Sciences
Nasir Masran
Juliet Njau
aamarpali roy
Dominic Taruvinga
Gary L Comstock
Science Journal of business Management
Bobbe Allen
African Journal of Biomedical Research
Olutosin A. Awolude
Arquivos de Medicina
Sakine Shekoohiyan
Leo Andrew B . Diego
Research Involvement and Engagement volume 10 , Article number: 83 ( 2024 ) Cite this article
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Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.
This paper talks about making research fairer for everyone involved. Sometimes, researchers ask members of the public for advice, guidance or insight, or for help to design or do research, this is sometimes known as ‘public engagement with research’. But figuring out how to do this in a fair and respectful way can be tricky. In this paper, we discuss how we tried to make some helpful tools. These tools help researchers decide if they need to get formal permission, known as ethical approval, for their work when they are engaging with members of the public or communities. They also give tips on how to do the work in a good and fair way. We produced three main tools. One helps people understand the important words used in this kind of work (known as a taxonomy). Another tool helps researchers decide if they need to ask for special permission (a self-assessment tool). And the last tool gives guidelines on how to do the work in a respectful way (a code of conduct). These tools are meant to help researchers do their work better and treat everyone involved fairly. The paper also talks about how more work is needed in the area, but these tools are a good start to making research fairer and more respectful for everyone.
Peer Review reports
In recent decades, “public involvement in research” has experienced significant development, becoming an essential element of the research landscape. In fact, it has been argued, public involvement may make research better and more relevant [ 7 , p. 1]. Patients’ roles, traditionally study participants, have transformed to become “active partners and co-designers” [ 17 , p. 1]. This evolution has led to the appearance of a multitude of definitions and terms to refer to these activities. In the UK, the National Co-ordinating Centre for Public Engagement, defines public engagement as the “many ways organisations seek to involve the public in their work” [ 9 ]. In this paper, we also refer to “public involvement,” which is defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” (UK Standards for Public Involvement). Further to this, the Health Research Authority (also in the UK), defines public engagement with research as “all the ways in which the research community works together with people including patients, carers, advocates, service users and members of the community” [ 6 ]; [ 9 ]. These terms encompass a wide variety of theorizations, levels of engagement, and terminology, such as ‘patient-oriented research’, ‘participatory’ research or services or ‘patient engagement’ [ 17 , p. 2]. For this paper, we use the term ‘public engagement with research’ or PEwR in this way.
Institutions have been set up to support PEwR activities. In the UK these include the UK Standards for Public Involvement in Research (supported by the National Institute for Health and Care Research), INVOLVE, and the National Coordinating Centre for Public Engagement (NCCPE). Most recently, in 2023, the UK’s largest funders and healthcare bodies signed a joint statement “to improve the extent and quality of public involvement across the sector so that it is consistently excellent” [ 6 ]. In turn, this has often translated to public engagement becoming a requisite for securing research funding or institutional ethical permissions [ 3 , p. 2], as well as reporting and publishing research [ 15 ]. Despite this welcomed infrastructure to support PEwR, there remain gaps in knowledge and standards in the delivery of PEwR. One such gap concerns the extent to which PEwR should be subject to formal ethical review in the same way as data collection for research.
In 2016, the UK Health Research Authority and INVOLVE published a joint statement suggesting that “involving the public in the design and development of research does not generally raise any ethical concerns” [ 7 , p. 2]. We presume that this statement is using the phrase ‘ethical concerns’ to narrowly refer to the kinds of concerns addressed by a formal research ethics review process, such as safeguarding, withdrawal from research, etc. Footnote 1 . To such an extent, we agree that public involvement with research is not inherently ‘riskier’ than other research activities.
Furthermore, a blanket need for formal ethical review risks demoting or disempowering non-academic contributors from the roles of consultants, co-researchers, or advisors to a more passive status as participants. Attending a meeting as an expert, discussing new project ideas, setting priorities, designing studies and, or interpreting findings does not require that we sign a consent form. Indeed, to do so clearly removes the locus of power away from the person signing and into the hands of the person who wrote the consent form. This particular risk is exacerbated when institutional, formal ethical review processes operate in complex, convoluted and obscure ways that often baffle researchers let alone members of the public.
However, we also recognize that PEwR is not without potential to do harm – something which formal research ethics review aims to anticipate and minimise. For example, a public lecture or a workshop could cause distress to audience members or participants if they learn for the first time that aspects of their lifestyle or personal history put them at higher risk of dementia. When patients are invited to join advisory panels, they may feel pressure to reveal personal details about their medical history to reinforce their expertise or legitimise their presence – especially in a room where most other people have potentially intimidating professional qualifications. Some patient groups may be exploited, if research involvement roles are positioned as an opportunity, or even a duty, and not properly reimbursed. When patients are more deeply involved in research roles, such as collecting or analysing data, they might experience distress, particularly if interacting with participants triggers their own painful or emotional memories [ 14 , p. 98]. Thus, at all levels of PEwR from science communication to embedded co-production, there is a danger of harm to patients or members of the public, and a duty of care on the part of the research team and broader institution who invited them in.
These concerns are not accessory to PEwR activities but rather exist at their heart. Following a review on the impacts of public engagement, Brett et al. conclude that “developing a wide view which considers the impact of PPI [public and patient involvement] on the people involved in the process can be critical to our understanding of why some studies that involve patients and the public thrive, while others fail” [ 1 , p. 388]. Despite the importance of these considerations, there is a stark absence of consistent guidance as to whether different forms of PEwR require formal ethical review. Nor is there, to our knowledge, any sustained attempt to provide a framework for ethical conduct of PEwR in the absence of formal review (see Pandya-Wood et al. [ 11 ]; Greenhalgh et al. [ 5 ]). This is, in part, due to there being a wide heterogeneity of practices, communities, and levels of engagement [ 8 , p. 6] that resists generalizable principles or frameworks.
The lack of frameworks about whether or how PEwR requires formal ethical review can, ironically, be a key barrier to PEwR happening. In our work as members of a university ethics review committee, we have found this lack of guidance to hamper appropriate ethical PEwR in several ways. Researchers may avoid developing PEwR initiatives altogether for fear of having to spend time or resources in securing formal ethical review (especially when this process is lengthy or resource-intensive). Likewise, they may avoid PEwR for fear that its conduction would be unethical. On the other hand, others could assume that the lack of a requirement for formal ethical review means there are no ethical issues or risks involved in PEwR.
Similarly, experts in PEwR who are not experienced with formal research ethics review may face barriers as their PEwR process becomes more elaborate, in-depth, or complex. For example, although a priority-setting exercise with members of an online community of people with depression was assessed as not requiring ethics review, the funding panel requested that formal ethics review be undergone for a follow-up exercised aimed at collecting data answering one of the priority questions identified in the previous priority-setting. It is crucial that innovations in PEwR and findings from this work are shared and yet academic teams may be unable to publish their work in certain journals which require evidence of having undergone formal ethical review. Finally, ethics committees such as ours often must rely on anecdotal knowledge to make judgements about what does or does not require formal ethical review, given the absence of standardized frameworks.
In this paper, we report and reflect on the development of specific tools and processes for assessing the ethical needs of PEwR initiatives, as members of an ethics review committee for a large University medical school. These tools aim to delineate boundaries between research data collection and PEwR activities of various kinds, provide a self-assessment framework for ethical practice in PEwR and, overall, give people greater confidence when conducting PEwR work. We describe and critically reflect on the development of the following resources:
a taxonomy to define key terms relating to PEwR with associated resource recommendations.
a self-assessment tool to support people understanding where their planned activities fall in relation to research or PEwR.
a code of conduct for ethical conduct of PEwR (appended to the self-assessment tool).
We will, first, describe our work as part of an institutional ethics committee, the identification of a need for specific guidance, and our key assumptions; we will then describe the process of developing these tools and processes; provide an overview of the tools themselves; and reflect on early feedback received and future work needed.
Identifying needs, goals and outputs.
The Edinburgh Medical School Research Ethics Committee (EMREC) provides ethical opinions to members of staff and postgraduate researchers within the University of Edinburgh Medical School in relation to planned research to be conducted on humans i.e. their data, or tissues. These research activities come from a wide range of disciplines, including public health, epidemiology, social science or psychology. EMREC does not review research that involves recruitment of NHS patients, use of NHS data, or other health service resources: such projects are evaluated by an NHS research ethics committee. EMREC is led by two co-directors and formed of over 38 members, which include experienced academics and academic-clinicians from a variety of disciplines. There are also 2–4 lay members who are not researchers.
EMREC receives regular enquiries about whether a specific piece of PEwR work (such as holding a workshop with people living with endometriosis to identify research priorities or interviewing HIV activists about their work during COVID-19) requires formal ethics review. In addition, often teams contact EMREC following completion of a PEwR activity that they want to publish because the journal in which they wish to publish has requested evidence of the work having undergone formal ethics approval. These enquiries are happening in the context of an institutional investment in staffing, leading to a significant degree of distributed expertise across the Medical School about diverse forms of PEwR.
Responding to this, in the summer of 2022, a Public and Patient Involvement and Engagement working group was formed by EMREC with the aim of developing new tools and processes to navigate the ethical implications of PEWR within the University of Edinburgh Medical School. The group’s original understandings were that:
PEwR is both important and skilled work that presents a unique set of ethical implications,
PEwR is a fragmented landscape where many people have relevant but different expertise and where a wide range of terminology is in use, and.
there is no existing widely-agreed framework for ethical PEwR.
This working group was designed to be temporary, lasting approximately six months. It was composed of eleven members with different degrees of seniority and disciplinary backgrounds - both members of EMREC and those from other parts of the Medical School, and other parts of the University of Edinburgh. Among these, there were both academics and PEwR experts in professional services (i.e. primarily non-academic) roles. The working group met four times (August, September and November 2022; and January 2023).
The group identified three key goals and, in relation to these, key outputs needed. The goals were: (1) help establish boundaries between research data collection (requiring an ethical opinion from EMREC) and PEwR activities of various kinds (requiring ethical reflection/practice but not a formal EMREC ethical opinion), (2) support colleagues to identify where their planned activities fell in the research-PEwR continuum and consequently the relevant ethical framework, and (3) identify ways of building confidence and capacity among staff to conduct PEwR projects. In relation to these goals, the working group initially agreed on producing the following key outputs:
A taxonomy outlining and defining key terms used in the PEwR work, with examples. While not universal or definitive, the taxonomy should help colleagues identify and label their activities and help determine the ethical considerations that would apply to conduct the work with integrity. It would also facilitate conversations between staff with varying levels and types of experience, and ensure that decisions around ethical conduct would be based on more than choice of terminology.
A self-assessment tool to provide a more systematic way to evaluate whether a given academic activity, involving a non-academic partner (organisation or individual) requires formal evaluation by a research ethics committee.
A list of resources collected both from within and beyond our institution that are relevant to the issue of ethics and PEwR and can serve as ‘further reading’ and training.
While we aimed to develop this work with a view to it being useful within the remit of the University of Edinburgh Medical School, we also understood that there was significant potential for these outputs to be of interest and relevance more widely. In this way, we aimed to position them as a pragmatic addition to existing guidance and resources, such as the NIHR Reflective Questions [ 2 ].
Across the first three meetings, the group worked together on the simultaneous development of the three outputs (taxonomy, self-assessment tool, and resources). The initial taxonomy was informed by the guidance produced by the Public Involvement Resource Hub at Imperial College London [ 10 ]. The taxonomy was developed as a table that included key terms (such as ‘public engagement’, ‘co-production’, or ‘market research’), with their definitions, examples, and synonyms. From early on, it was decided that different key terms would not be defined by the methods used, as there could be significant overlap among these – e.g. something called a focus group might be a part of a consultation, market research or research data collection.
A draft table (with just six categories) was presented in the first meeting and group members were asked to work on the table between meetings, including providing additional examples, amending language, or any other suggestions. This was done on a shared document using ‘comments’ so that contradictory views could be identified and agreements reached. The table was also shared with colleagues from outside the University of Edinburgh Medical School to capture the range of terminologies used across disciplines, recognising the interdisciplinary nature of much research.
Through this process, additional key terms were identified, such as “science communication” and “action research,” definitions were developed more fully, and synonyms were sometimes contextualized (by indicating, for example, shades of difference or usages specific to an area). Upon further work, three additional sections were added to the taxonomy tool: first, an introduction was developed that explained what terminology our specific institution used and noted that the boundaries between different terms were often “fuzzy and flexible.” In addition, the group agreed that it would be useful to provide a narrative example of how different forms of public engagement with research might co-exist and flow from one to another. To this end, a fictional example was developed where a team of clinical researchers interested in diabetes are described engaging in scoping work, research, co-production, science communication and action research at different times of their research programme. Finally, a section was also added that prompted researchers to reflect on the processes of negotiating how partners can be described in research (for example, whether to use terms such as ‘patient’ or ‘lay member’).
For the self-assessment tool, a first iteration was a table with two columns (one for research or work requiring formal ethical review and one for PEwR or work not requiring formal ethical review). The aim was for group members to fill the table with examples of activities that would fall under each category, with a view to identifying generalizable characteristics. However, this task proved complicated given the wide diversity of possible activities, multitude of contexts, and sheer number of exceptions. To address this, group members were asked to complete a case-based exercise. They were presented with the following situation: “I tell you I’m planning a focus group with some autistic folk” and asked how they would determine whether the activity would be a form of data collection for a research project (requiring formal ethical review) or another form of PEwR. Group members were asked, with a view to developing the self-assessment tool, to identify which questions they would ask to assess the activity. The replies of working group members were synthesized by one of the authors (SFW) and presented at the following meeting.
Through discussion as a group, we determined that the questions identified as useful in identifying if an activity required formal ethical review fell, roughly, under four main areas. Under each area, some indicators of activities were provided which were “less likely to need ethics review” and some “more likely to need ethics review”. The four umbrella questions were:
What is the purpose and the planned outcome of the activity? (see Table 1 for an excerpt of the initial draft answer to this question)
What is the status of the people involved in the activity? (indicators of less likely to need ethics review were “participants will be equal partners with academic team” or “participants will be advisors” and indicators more likely to require ethics approval were “participants will undertake tasks determined by academics” or “participants will contribute data or sign consent forms”).
What kind of information is being collected? (indicators of less likely to need ethics review were “asking about expert opinion on a topic” or “sessions will be minuted and notes taken” and indicators more likely to require ethics approval were “sessions will be recorded and transcribed” or “asking about participants’ personal experiences”).
What are the risks inherent in this activity? (indicators of less likely to need ethics review were “participants will be involved in decision-making” or “participants will be credited for their role in a manner of their choosing” and indicators more likely to require ethics approval were “participants’ involvement will and must be anonymized fully” or “participants have a choice between following protocol or withdrawing from the study”).
Upon further work, the group decided to modify this initial iteration in several ways leading to the final version. First, a brief introduction explaining the purpose of the tool was written. This included information about the aims of the tool, and a very brief overview of the process of formal research ethics review. It also emphasised the importance of discussion of the tool within the team, with PEwR experts and sometimes with EMREC members, depending on how clear-cut the outcome was. Second, we included brief information about what are ‘research’ and ‘public engagement with research’ with a view to supporting people who may not be familiar with how these concepts are used by ethics review committees (for example, lay co-applicants or co-researchers). Third, we included key guidance about how to use the tool, including ‘next steps’ if the activity was determined to be research or engagement. Importantly, this emphasised that none of the questions posed and indicators given were definitive of something needing or not needing formal research ethics review, but instead they should be used collectively to signpost a team towards, or away from, formal review.
Finally, while the four umbrella questions remained the same as in the previous iteration, the indicators under each were further refined. In discussing the previous version, the group agreed that, while some indicators could relate to an activity falling into either category (research or engagement) depending on other factors, there were others that were much more likely to fall under one category than the other. In other words, while no single indicator was deterministic of needing or not needing formal review, some indicators were more influential than others on the final self-assessment outcome. Thus, we divided the indicators associated with each umbrella question into two sub-groups. The more influential indicators were labelled as either “probably doesn’t need ethical review” or “almost certainly needs ethical review”. Less influential indicators were labelled as either “less likely to need ethical review” or “more likely to need ethical review.” This is shown in Table 2 .
This new format retains the awareness of the sometimes-blurry lines between research and PEwR for many activities, but also seeks to provide stronger direction through indicative activities that are more clear-cut, with a particular view to supporting early-career researchers and people new to ethics reviews and/or engagement processes.
A key concern of the group was what would happen next if a planned activity, using the self-assessment tool, was deemed as PEwR. The formal review process for research would not be available for a planned activity identified as PEwR i.e. completing a series of documents and a number of protocols to deal with issues such as data protection, safeguarding, etc. This would leave a vacuum in terms of guidance for ethical conduction of PEwR. The group was concerned that some people using the self-assessment tool might arrive at the conclusion that their planned activity was entirely without ethical risks, given that it was not required to undergo formal review. Others might be conscious of the risks but feel adrift as to how to proceed. This was a particular concern with early-career researchers and indeed established academics turning to PEwR for the first time: we wanted to facilitate their involvement with PEwR but we were also aware that many may lack experience and resources. To address this, the group decided to develop an additional output comprising a series of reflective prompts to guide researchers in planning and conducting engagement activities.
The prompts were organized under four headings. First, “Data Minimisation and Security” included information about required compliance with data protection legislation, suggestions about collecting and processing information, and ideas around ensuring confidentiality. Second, “Safeguarding Collaborators and Emotional Labour” prompted researchers to think about the risk of partners becoming distressed and suggested what things should be planned for in this regard. Third, “Professional Conduct and Intellectual Property” included advice on how to clearly manage partners’ expectations around their contributions, impact, and intellectual property. Finally, fourth, under “Power Imbalances”, the guidance discusses how researchers may work to address the inherent imbalances that exist in relationships with partners. It prompts the researcher to think about choice of location, information sharing, and authorship among others. While the Edinburgh Medical School Research Ethics Committee remains available for consultation on all these matters, as well as dedicated and professional PEwR staff, the group developed these guidelines with a view both to emphasizing the fact that an activity not requiring formal ethical review did not mean that the activity was absent of risk or did not require careful ethical planning; and to support those who may be unfamiliar with how to develop engagement activities. It was decided that this guideline should follow the self-assessment tool for clarity.
Finally, in the process of developing these outputs (the planned taxonomy and assessment tool, and the additional reflective prompts appended to the assessment tool), the group collected a large number of resources, including academic papers (e.g. Staniszewska et al. [ 16 ]; Schroeder et al. [ 13 ]; Redman et al. [ 12 ]; Fletcher-Watson et al. [ 4 ]), guidance produced by other institutions, and key online sites with information about national frameworks or policy. Among these, key resources were selected and appended to the taxonomy document. The final version of these documents can be found as appendices (Supplementary Material 1 : Assessment tool and reflective prompts; Supplementary Material 2 : Taxonomy and resources).
The guidance and tools presented here are designed to clarify a boundary between research and engagement that is poorly defined and could cause harm if not well understood. In sharing them, we aim to facilitate researchers’ engagement with PEwR by providing familiarity with the terminology and approaches, examples, and suggesting key considerations. Most importantly, they support researchers to determine whether their planned activity should undergo a formal ethical review process or not – and if not, guides them towards ethical conduct in the absence of formal review. Reflecting on the process much of what we have explained essentially reflects a distinction between PEwR and research data collection that can be encapsulated within the idea of ‘locus of control’: namely that during PEwR the locus of control, as far as possible, sits with the engaged communities or members.
It should be noted, however, that researchers and these guidance and tools exist within a larger landscape, with added regulatory processes. Thus, researchers may need (regardless of whether their planned activity is research or engagement) to navigate additional compliance such as data protection or information security protocols and / or to consider reputational risk associated with certain topics. We are aware that the overlap of complex and sometimes obscure regulatory demands complicates the task of conducting both research and PEwR, as it requires researchers to juggle multiple procedures, documents, and approvals. This publication does not resolve all the questions that exist, but it does attempt to take a bold step towards confronting grey areas and providing systematic processes to navigate them.
The outputs described above were made available on the University of Edinburgh Medical School Research Ethics Committee intranet site under the heading “Public Engagement with Research.” While we do not collect statistics on the number of times the resources have been used, the committee has received positive feedback from people who have engaged with the documents. For example, one researcher commented that, in the process of developing an engagement activity, they had been “grappling with precisely these questions (of whether this qualifies as research, and whether it requires ethical review)” and that the documents were “quite timely and helpful. It allows me to think about these considerations in a systematic manner and it’s handy for me to send on to others as a framework for discussion should we have differing opinions.” It was this mention to the possibility of these documents being used as a framework for discussion that prompted us to write this paper as a way of sharing them beyond the University of Edinburgh College of Medicine and Veterinary Medicine (where they are already used for training early-career researchers and in the MSc in Science Communication and Public Engagement). While we think they can be useful, we also encourage potential users to adapt them to their specific contexts, with different institutions potentially establishing differing procedures or requirements. To that end, we have shared in this paper the process of writing these documents so that other people and teams may also think through them productively and creatively.
In developing these documents, we sought to answer a need among members of our immediate community, seeking to better assess whether an activity required formal ethical review and wanting guidance to ethically conduct PEwR work. However, we also came to realize the limitations of existing approval and governance processes. In our case, a key reason why these documents were developed is because existing formal ethical review processes would not be adequate to capture the particularities and complexities of PEwR in our large, diverse Medical School.
Looking back at the tools we developed and the feedback received, we are also satisfied with the pragmatic approach we took. There is a vast amount of resources and literature available about how to conduct PEwR, as well as a multitude of accounts and reflections both of an anecdotal and epistemological nature. Building on this conceptual work and associated principles, we sought to develop pragmatic, clear, applicable tools, without overwhelming users with a multitude of available resources and complex theory. This is, we feel, particularly applicable to contexts like ours: a large, very diverse medical school which encompasses biomedical to social science disciplines where researchers and funders have vastly differing expectations and knowledge of PEwR.
This process also led us to reflect on the practical functions of formal ethical review. Formal ethics approval provides applicants with structured resources to think and plan about their work, feedback and guidance about their plans, and—most commonly—a code and letter than can be used to easily report to journals that your research has met a specific ethical threshold. With these documents we have sought to provide some similar, pragmatic guidance to support and empower people, through a self-assessment process. This begs the question, what, if any, formal approval processes should be developed for PEwR? Are such formal processes in any way adequate to the ethos of PEwR? Would formal independent review necessarily conflict with the values of PEwR, namely the empowerment of community members as decision-makers and experts? Thus, these documents and this paper contribute to an ongoing conversation as PEwR continues to develop in frequency and sophistication in health and social care research.
No datasets were generated or analysed during the current study.
The difference between research and public engagement is a complex one. Formal ethics approval, which is often seen as a regulatory or compliance mechanism, may not always be a good marker of this boundary, as it may ignore complex issues such as the distribution of power, the ethos of the activities, or their aims. Furthermore, different institutions use different criteria to determine what activities require ethics approval or are considered research. In this paper we reflect on the process of developing tools which we intended as pragmatic interventions that would support researchers, especially those without previous experience of PEwR to label their planned activities and understand their implications. Thus, we employ—even if not at all times comfortably—the framework that equates research with activities requiring ethics approval and PEwR with activities not requiring ethics approval.
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This research was supported, in part, by the Economic and Social Research Council [ES/X003604/1].
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JGI: conceptualisation and writing (original draft); IB, DJD, SG, HH, FM, CP, ES, SR, FW: conceptualisation, writing (editing and reviewing); SFW: conceptualisation and writing (original draft).
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Garcia-Iglesias, J., Beange, I., Davidson, D. et al. Ethical considerations in public engagement: developing tools for assessing the boundaries of research and involvement. Res Involv Engagem 10 , 83 (2024). https://doi.org/10.1186/s40900-024-00617-8
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Paper title | Place the title three to four lines down from the top of the title page. Center it and type it in bold font. Capitalize of the title. Place the main title and any subtitle on separate double-spaced lines if desired. There is no maximum length for titles; however, keep titles focused and include key terms. |
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| Use the page number 1 on the title page. Use the automatic page-numbering function of your word processing program to insert page numbers in the top right corner of the page header. | 1 |
The professional title page includes the paper title, author names (the byline), author affiliation(s), author note, running head, and page number, as shown in the following example.
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Paper title | Place the title three to four lines down from the top of the title page. Center it and type it in bold font. Capitalize of the title. Place the main title and any subtitle on separate double-spaced lines if desired. There is no maximum length for titles; however, keep titles focused and include key terms. |
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Author names
| Place one double-spaced blank line between the paper title and the author names. Center author names on their own line. If there are two authors, use the word “and” between authors; if there are three or more authors, place a comma between author names and use the word “and” before the final author name. | Francesca Humboldt |
When different authors have different affiliations, use superscript numerals after author names to connect the names to the appropriate affiliation(s). If all authors have the same affiliation, superscript numerals are not used (see Section 2.3 of the for more on how to set up bylines and affiliations). | Tracy Reuter , Arielle Borovsky , and Casey Lew-Williams | |
Author affiliation
| For a professional paper, the affiliation is the institution at which the research was conducted. Include both the name of any department and the name of the college, university, or other institution, separated by a comma. Center the affiliation on the next double-spaced line after the author names; when there are multiple affiliations, center each affiliation on its own line.
| Department of Nursing, Morrigan University |
When different authors have different affiliations, use superscript numerals before affiliations to connect the affiliations to the appropriate author(s). Do not use superscript numerals if all authors share the same affiliations (see Section 2.3 of the for more). | Department of Psychology, Princeton University | |
Author note | Place the author note in the bottom half of the title page. Center and bold the label “Author Note.” Align the paragraphs of the author note to the left. For further information on the contents of the author note, see Section 2.7 of the . | n/a |
| The running head appears in all-capital letters in the page header of all pages, including the title page. Align the running head to the left margin. Do not use the label “Running head:” before the running head. | Prediction errors support children’s word learning |
| Use the page number 1 on the title page. Use the automatic page-numbering function of your word processing program to insert page numbers in the top right corner of the page header. | 1 |
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The American Bar Association's Standing Committee on Ethics and Professional Responsibility released ABA Formal Opinion 512: Generative Artificial Intelligence Tools on July 29. Here’s a roadmap of how we got here, and a reference guide to where we are with select case law and legal ethics rules in the era of GenAI.
August 11, 2024 at 05:58 PM
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At least 55 of ILTACON 2024’s sessions have some reference to artificial intelligence, and for almost every attendee in Nashville this week, legal ethics should be an important issue—especially when it comes to generative AI (abbreviated often as “GenAI” or, in the case of the American Bar Association, “GAI”).
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Academic publisher Wiley has sold access to its research papers to firms developing large language models. Credit: Timon Schneider/Alamy
Academic publishers are selling access to research papers to technology firms to train artificial-intelligence (AI) models. Some researchers have reacted with dismay at such deals happening without the consultation of authors. The trend is raising questions about the use of published and sometimes copyrighted work to train the exploding number of AI chatbots in development.
Experts say that, if a research paper hasn’t yet been used to train a large language model (LLM), it probably will be soon. Researchers are exploring technical ways for authors to spot if their content being used.
AI models fed AI-generated data quickly spew nonsense
Last month, it emerged that the UK academic publisher Taylor & Francis, had signed a US$10-million deal with Microsoft, allowing the US technology company to access the publisher’s data to improve its AI systems. And in June, an investor update showed that US publisher Wiley had earned $23 million from allowing an unnamed company to train generative-AI models on its content.
Anything that is available to read online — whether in an open-access repository or not — is “pretty likely” to have been fed into an LLM already, says Lucy Lu Wang, an AI researcher at the University of Washington in Seattle. “And if a paper has already been used as training data in a model, there’s no way to remove that paper after the model has been trained,” she adds.
LLMs train on huge volumes of data, frequently scraped from the Internet. They derive patterns between the often billions of snippets of language in the training data, known as tokens, that allow them to generate text with uncanny fluency.
Generative-AI models rely on absorbing patterns from these swathes of data to output text, images or computer code. Academic papers are valuable for LLM builders owing to their length and “high information density”, says Stefan Baack, who analyses AI training data sets at the Mozilla Foundation, a global non-profit organization in San Francisco, California that aims to keep the Internet open for all to access.
How does ChatGPT ‘think’? Psychology and neuroscience crack open AI large language models
Training models on a large body of scientific information also give them a much better ability to reason about scientific topics, says Wang, who co-created S2ORC, a data set based on 81.1 million academic papers. The data set was originally developed for text mining — applying analytical techniques to find patterns in data — but has since been used to train LLMs.
The trend of buying high-quality data sets is growing. This year, the Financial Times has offered its content to ChatGPT developer OpenAI in a lucrative deal, as has the online forum Reddit, to Google. And given that scientific publishers probably view the alternative as their work being scraped without an agreement, “I think there will be more of these deals to come,” says Wang.
Some AI developers, such as the Large-scale Artificial Intelligence Network, intentionally keep their data sets open, but many firms developing generative-AI models have kept much of their training data secret, says Baack. “We have no idea what is in there,” he says. Open-source repositories such as arXiv and the scholarly database PubMed of abstracts are thought to be “very popular” sources, he says, although paywalled journal articles probably have their free-to-read abstracts scraped by big technology firms. “They are always on the hunt for that kind of stuff,” he adds.
Proving that an LLM has used any individual paper is difficult, says Yves-Alexandre de Montjoye, a computer scientist at Imperial College London. One way is to prompt the model with an unusual sentence from a text and see whether the output matches the next words in the original. If it does, that is good evidence that the paper is in the training set. But if it doesn’t, that doesn’t mean that the paper wasn’t used — not least because developers can code the LLM to filter responses to ensure they don’t match training data too closely. “It takes a lot for this to work,” he says.
Robo-writers: the rise and risks of language-generating AI
Another method to check whether data are in a training set is known as membership inference attack. This relies on the idea that a model will be more confident about its output when it is seeing something that it has seen before. De Montjoye’s team has developed a version of this, called a copyright trap, for LLMs.
To set the trap, the team generates sentences that look plausible but are nonsense, and hides them in a body of work, for example as white text on a white background or in a field that’s displayed as zero width on a webpage. If an LLM is more ‘surprised’ — a measure known as its perplexity — by an unused control sentence than it is by the one hidden in the text, “that is statistical evidence that the traps were seen before”, he says.
Even if it were possible to prove that an LLM has been trained on a certain text, it is not clear what happens next. Publishers maintain that, if developers use copyrighted text in training and have not sought a licence, that counts as infringement. But a counter legal argument says that LLMs do not copy anything — they harvest information content from training data, which gets broken up, and use their learning to generate new text.
AI is complicating plagiarism. How should scientists respond?
Litigation might help to resolve this. In an ongoing US copyright case that could be precedent-setting, The New York Times is suing Microsoft and ChatGPT’s developer OpenAI in San Francisco, California. The newspaper accuses the firms of using its journalistic content to train their models without permission.
Many academics are happy to have their work included in LLM training data — especially if the models make them more accurate. “I personally don’t mind if I have a chatbot who writes in the style of me,” says Baack. But he acknowledges that his job is not threatened by LLM outputs in the way that those of other professions, such as artists and writers, are.
Individual scientific authors currently have little power if the publisher of their paper decides to sell access to their copyrighted works. For publicly available articles, there is no established means to apportion credit or know whether a text has been used.
Some researchers, including de Montjoye, are frustrated. “We want LLMs, but we still want something that is fair, and I think we’ve not invented what this looks like yet,” he says.
doi: https://doi.org/10.1038/d41586-024-02599-9
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A number of professional associations, government agencies, and universities have developed specific codes of ethics related to research. Some of the ethical principles that have been articulated are important for research integrity, including honesty, objectivity, carefulness, respect for intellectual property, confidentiality, nondiscrimination, transparency, social responsibility, respect ...
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Revised on May 9, 2024. Ethical considerations in research are a set of principles that guide your research designs and practices. Scientists and researchers must always adhere to a certain code of conduct when collecting data from people. The goals of human research often include understanding real-life phenomena, studying effective treatments ...
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