Is the Presumption of Anonymity a Matter of Protection or Paternalism? Obtaining Ethical Approval for Participatory Research on Pornography

Learning Outcomes

By the end of this case, students should be able to

• Understand the complexity of ethical considerations when undertaking participatory research
• Analyze the friction that can arise between different ethical principles
• Evaluate the role that ethical principles have for those participating in the research
• Consider how people participating in research can be involved and included in ethical considerations within the research process

Project Overview and Context

This case study will discuss and analyze the process of obtaining ethical approval for doctoral research into women’s experiences of pornography using a participatory research design. My research, the Living with Porn(ography) project, explores women’s lived experiences of pornography. The aim is to develop our sociological understandings of what the realities of pornography for women’s lives are, and to do this through looking at their lived experiences of it. The participatory methodology is integral to the research, and my use of it stems from my personal and political beliefs regarding the conduct of research. Furthermore, I believe such an approach could offer exciting opportunities for new insights and knowledge into pornography. The methodology adopted for this project had a large bearing on the ethical considerations associated with it. I had not only the established sociological ethical procedures to consider but also the ethical responsibilities that come with participatory research.

During the process of applying for ethical approval from the University of Sheffield, I perceived a friction to exist between the common ethical principles that apply to social research and the ethical stance of participatory research. My initial application was unsuccessful and subject to compulsory changes. This was primarily due to the fact that I had elected to make anonymity an optional choice for the women who participate.1 This is usually something that is automatically provided to participants in research. My feeling was that to enforce blanket anonymity would be unethical, and contradictory to the aims and objectives of research motivated by feminist and participatory principles. Following the university ethic reviewers (UERs) decision, I found myself in an ethical quandary regarding how best to proceed—how to develop an ethical strategy which complemented the research methodology but satisfied the concerns of the UERs.

In this case study, I will outline this process of obtaining ethical approval, analyze the ensuing dilemma I had to negotiate and resolve, and critically consider this and what can be learned from it. There is a growing body of literature on the limitations of research ethics committees (RECs) particularly for participatory and collaborative research (e.g., Faulkner, 2004; Kuriloff, Andrus, & Ravitch, 2008; Tamariz et al., 2015). This case will contribute to these discussions from the viewpoint of conducting feminist participatory research into pornography. This case study will enable the reader to critically consider the role of ethics in the research process, and how to negotiate the ethics of participatory research.

Research Background

Pornography is and has always been a controversial topic in our society. Due to technological developments and the growth of the Internet, pornography has become more readily available and accessible than ever before. This has led to new concerns around pornography, such as children accessing it or the rise in “revenge pornography”. At the same time, this growth has sparked new hopes about its potential for sexual expression, particularly for new audiences and different sexualities and sexual preferences. Making sense of pornography can be somewhat difficult in the face of these competing positions. The present moment is, therefore, a particularly pertinent time for pursuing research into pornography and developing a better understanding of its role in our society. My doctoral research project evolved out of two previous studies I conducted into young women’s perceptions of the consumption of pornography by men (one conducted for a 6-week undergraduate research project and the other for a Master’s dissertation). These previous studies were instrumental in shaping the subject area and research methodology for this project.

My background in pornography research indicates that there is no universal epistemological or methodological approach for examining the topic. It has been researched via a variety of methodological approaches and subject disciplines (Attwood & Smith, 2014; McKee, 2014). There is, then, a multitude of knowledge and “expertise” on pornography. However, despite this, I found my own research indicated something of a disconnect between the dominant narratives on pornography and women’s opinions on, and experiences of, it. There is a challenge, then, to bridge women’s actual experiences of pornography with the way it is, and they are, represented in academic research and debates. As a researcher interested in feminist, participatory, and emancipatory research principles, I feel that this is as much of a methodological issue as it is about researching new subject matter. I therefore elected to adopt a participatory methodology as doing so will enable the women who participate to have a key role in guiding the research. The research project has the twin objective of being a study on pornography, and an experiment in collaborative and participatory production of research on pornography.

Research Design

Epistemological and methodological considerations were of integral importance to this project. The research design was carefully considered in the light of the epistemological role methodologies play in the “getting of knowledge” (Stanley & Wise, 2008, p. 222). My research is, then, guided by principles associated with feminist, participatory, and emancipatory research. Although these are differing and diverse epistemological and methodological positions, there are significant overlaps and commonalities.

These different positions offer innovative ideas of how to construct more inclusive, well-rounded knowledge through the transformation of research relationships. They widen the scope of what is considered authoritative knowledge, of who can produce knowledge, and what the aim of research should be. They recognize the importance of experiential knowledge—the knowledge and expertise that comes through lived experience (Harding, 2004; Lykes and Hershberg, 2012; Oliver, 1992). Feminist epistemologists have argued the inclusion of women’s experiences in knowledge is crucial to women’s empowerment (Duelli Klein, 1983). Emancipatory researchers argue that transforming the “social relations of research production” can have emancipatory potential (Oliver, 1992). People are part of formulating knowledge that concerns their lives. Research has the capacity to be more inclusive, transformative, and action oriented.

A similar transformation has been key to the development of my research. When I previously conducted research on pornography, I asked women how they felt about men using pornography because this was what I cared about. It was only through hearing the experiences of the women who participated in my early research that I could reflect on how my own experiences, beliefs, and understandings had shaped my research. Without encountering the experiential knowledge of these women, I would not have found out about the diverse range of experiences that women have in relation to pornography, nor would I have been in a position to reflect on my own assumptions. As a result, I felt that by enabling women to have a key role in guiding the project, we would be able to work out what the important questions are, and to produce knowledge on a topic that is relevant to them. In recognition of their expertise and involvement, my research positions the women who participate as co-researchers, rather than research participants.

To conduct this participatory research project, I designed an appropriate research method. This method was subject to change during the application for ethical approval; initially, I intended to include more methods for data collection but this became scaled down. The final method for which I sought ethical approval comprised a core research group (CRG), supplemented by individual interviews. The CRG would include 10 to 12 women recruited from the Sheffield area who would meet regularly. In recognition that not all the women who might be interested in participating would be able to commit to regular group meetings, 10 to 15 individual interviews would also be conducted, so as to widen the range of perspectives included.

Ethical Strategy

When applying for ethical approval for my research, there were numerous considerations that needed to be taken into account. These stemmed from the conventional ethical practices within social research, and the commitment to participatory research. In addition, there were additional ethical considerations pertaining to the different method of data production utilized within the project. Diener and Crandall (1978) identify four key areas for ethical concern within social research: harm to participants in research, gaining informed consent, privacy, and the use of deception. Regarding my research, these were pertinent to the potentially sensitive topic of pornography, discussions taking place in a group setting, audio recording the research and the storage of data, and gaining informed consent. Participatory researchers also identify the ethical commitment that comes from collaborative researching. Brydon-Miller (2008) note the importance of considering “relationships of power” within the research, and how participants are included in the “generation, ownership, and dissemination of knowledge” (p. 202). I therefore needed to consider how I could facilitate the women’s involvement in the project, and mitigate my implicit authority and control. In addition, I needed to consider how these women could have ownership over their contribution, and for participating to have some benefit for them, particularly as I would have to be considered the sole author of my PhD.

Consequently, I had to develop a substantive ethical strategy that adhered to these various commitments, one that would ensure responsible research practice while also being best for those who take part. My research concerns a potentially sensitive topic, and entails asking women about personal and intimate details. To gain informed consent, I designed an information sheet that clearly and concisely set out what participating would entail. No aspect of the research was to be conducted covertly. All the women would need to sign a consent form which detailed key aspects of the ethical strategy, and they would all be given opportunity to ask questions prior to signing the form. All the women would be free to withdraw at any point, and would not be obliged to take part in any activity (including looking at pornography) or answer any question if they do not wish to do so. I also identified information and support services to pass on to the women should any of them become distressed, and provided details of my supervisor should they wish to make a complaint or to contact them for any reason. They would be offered confidentiality but also be made aware of the limitations of this promise. If they were to disclose anything of a criminal nature or the restriction of someone’s rights, then I would be forced to break confidentiality. In addition, for those participating in the group, I was clear that I could not offer complete confidentiality and they should only share in the group what they felt comfortable sharing in a wider setting.

Something of my ethical strategy was, then, preconfigured but other matters were left open to be negotiated with the women who participate. For example, in recognition that conflict could arise in the CRG, I stated in the ethical application that we would need to develop ground rules as to how we would conduct ourselves in the group. However, the exact content of these rules was to be decided collectively with the group members. In addition, in keeping with the participatory methodology, anonymity was to be a choice for the women who participate, to enable them to take credit for, and ownership of, their involvement in the project if they wished. This choice would be discussed and negotiated with the women once they had volunteered to take part.

Ethical Dilemma

The real ethical quandary for this project arose when my initial application for ethical approval did not receive a favorable opinion, and was subject to compulsory amendment. The UERs asked for several changes, the most significant of which was that the anonymity of the women needed to be automatically provided and not an option or choice. They were concerned by the potential compromise to confidentiality, and felt it was problematic for some women to be anonymized and others not. They felt that providing anonymity for all was more straightforward, ethically preferable, and should be enforced even if the women desired otherwise. While trying to challenge the norms of research production, I faced immediate resistance from those same norms. My key concern was that the women would not have a choice even if they expressed an interest in attaching their identity to the research. For me, this was not ethically more straightforward. It called into question what the aim or ends of ethical principles and review might be. Throughout this section, I have included questions that arose during this process. These are not pointed questions but, rather, my reflections upon receiving comments on my application; I encourage you to reflect in the same way.

Anonymity has been a crucial component of good ethical practice, and is often assumed to be a given within research, largely for the protection it offers people who participate in research. For example, the British Sociological Association (BSA) ethical guidelines states, “The anonymity and privacy of those who participate in the research process should be respected” (BSA, 2002). Although it does not stipulate anonymity must be enforced, the section on anonymity is clearly underpinned by an assumption that it will be offered as a matter of course. Offering anonymity to people participating in research is obviously important; it enables them to share their stories confidentially, and protects them from any negative consequences that could arise from so doing. I respect the importance of anonymity, and this was reflected in my ethical position in which everyone involved would be offered anonymity. However, despite the potentially sensitive nature of the topic, I feel there is a good case within this research to allow the women to acknowledge their identity and involvement.

It is important to question the notion of harm within the research process. There is a fear of the harm that could come to pass to a person participating in research if they share their story and do so in a way that it can be attributed to them. This is undoubtedly possible, so I do not wish to trivialize this issue. However, there are cases where enforced anonymity is felt to be equally harmful. For example, some have highlighted that the lack of choice is, in itself, a potentially harmful process. Nettle (2001) has written on her experiences of being a participant in research into women who live with problem drinkers. She argues that she found it more harmful to be made anonymous, to be assigned a pseudonym, and for her identity to be “lost” in the research. She felt it should be a choice for her to make. For her, the loss of choice was harmful and is, therefore, of ethical concern.

In addition, there are considerations to be made around the potential for harm if participants in research are unable to take ownership of their involvement. Part of my concern about enforced anonymity is that the women are then unable to take credit for their part in the project. Considering that I already obtain sole authorship of the PhD, this further limits the extent to which the women can be part of the “generation, ownership, and dissemination of knowledge” (Brydon-Miller, 2008, p. 202). The fact that they cannot be credited for their participation undermines the principles of participatory research. It also exaggerates the extent of my contribution as I would potentially receive all the credit for a collaborative project. Anonymity could potentially undermine notions of co-research and co-production. The women participating in my research bring experiential expertise to the project, but how can we challenge notions of expertise if those who have “lived experience” must remain anonymous at our insistence? Ultimately, I am free to share my experiences and to publish under my own name while being afforded the respectability that comes with “academic expertise.” How do we challenge hierarchies in knowledge production if we as academics are enforcing anonymity without negotiation, and “academic expertise” remains the primary means of talking about sensitive topics under your real identity?

In relation to this research topic, there is also contradiction in having a blanket policy of anonymity. When I studied pornography previously, the women I spoke to articulated their desire for women to be able to talk about sex and pornography more freely in society. They discussed the taboo nature of women’s sexuality, and felt that if people were able to talk about sex more freely, this could challenge some of the issues they feel arise from pornography. This project is about creating a space for women to share their experiences. To then enforce anonymity is antithetical to this. How do we widen the conversation on sex and pornography if we can only speak about it through anonymized voices? There is a real question to be asked about whether topics remain sensitive because we treat them as such. For example, Nettle (2001, p. 236) suggests that although she revealed personal details of her life, she wanted to “speak up and speak out” and looks forward to the stigma around “difference” being eradicated. At what point does talking about sex or pornography publicly become shameful or harmful? Does making this judgment reinforce that shame or harm? This ethical strategy of anonymity does not necessarily complement the aims and objectives of the research.

I hope that it is clear that the ethical considerations that I contemplated were numerous. I reiterate that my strategy was for anonymity to be a choice, not for it to be abandoned completely. Although my ethical strategy may not be straightforward, I have tried to make clear why I do not think blanket anonymity is straightforward either. To recognize the expertise and involvement of people participating in research is consistent with giving them choice and agency within the research process. As a researcher, do I break my control, do I challenge the dominance of my expertise over the research process, if I enforce anonymity? Does enforcing anonymity free a person through protection or paternalistically decide what is best for them?

Resolution of the Dilemma

The dilemma that I needed to resolve was whether to compromise on a key component of the participatory methodology and enforce anonymity. Ultimately, with the support of my supervisors, I was able to challenge this compulsory change and reapplied for ethical approval with a clear discussion as to why enforced anonymity was inappropriate for this project. I outlined what I have discussed here, and how I would seek to ensure that any women involved in the project who chose not to be anonymous would be protected from harm within the research. At this stage, the application was again returned to me with further compulsory changes, and a renewed suggestion of anonymity. However, as long as I further developed my ethical strategy to clearly establish that I was taking the issue of anonymity seriously, there was also an acceptance that anonymity could be a choice for the women who participated in my research. They asked me to outline how I would present the choice to these women and, as people may not know the usual procedures around anonymity, how I would facilitate their capacity to make an informed choice on this matter. They suggested I allow the women to read documents or chapters with any non-anonymized data and to agree with them on how their data would be used. I was also asked to create separate consent forms for those who chose to be anonymous and those who chose not to be.

I made these changes and was finally given ethical approval in March 2017, almost 5 months after I had first applied for it. I was able to resolve the issue but, ultimately, this was a drawn-out and difficult process. Unfortunately, it meant delaying the start of the project and reducing the time I have to complete it. Furthermore, it was not clear from the outset that I would be able to resolve the matter and incorporate the choice of anonymity in the research. In hindsight, there were benefits to this process, I was forced to clarify my methodology and associated ethical stance. As a researcher, I have learnt many practical lessons, some of which I reflect upon below. However, I do feel there was a procedural limitation with the ethics process to adequately respond to the ethical principles of participatory research.

Practical Lessons Learned

The first lesson I learned from this ethical dilemma is to be clear about what you are seeking ethical approval for. When I first put my ethics application together, I was still not completely certain of what methods, exactly, I would be using. I understand why this was the case, I was trying to do participatory research and I did not want the method to be fixed before I had met the women taking part, and discussed the research. However, concurrent to this, I was not sure what a realistic amount of data to collect was. In hindsight, if you are going to make something palatable when asking for approval for something that is outside of the norms of research, then you need to put forward a robust and clear plan. I was unsure of whether I would also be interviewing members of the research group, and I did not clearly label the different types of participation my project included. I think at times the reviewers were confused about who I was talking about and what permissions I was asking for. The research strategy needed to be clearer, and accompanied by a concise explanation. This may seem like obvious advice but nobody knows your research as well as you do and sometimes it is easy to forget that it is not as clear to other people as it is to you. I would therefore recommend clarity over what it is that you are asking ethical approval for.

The second lesson I learned is the importance of putting yourself in the reviewer’s shoes. Try to consider what it is that you might not know or might not have thought of. I am glad I stuck to my resolutions but I needed to be willing to look at other perspectives as well. The reality is that despite my frustrations and convictions that this was the best course of action, there were issues I had not thought of. My supervisor asked me about what would happen if a woman taking part agreed not to be anonymous and later regretted having their name attributed to this research? I had not thought of this issue, not just because of my newness to being a researcher but perhaps in part due to my age and my own situation in life. For example, I am not a parent nor involved in a profession where having this attributed to me could be deemed inappropriate. The reviewers needed to know whether I had anticipated the various eventualities of what I was asking approval for. They ensured that I developed a more robust, clear ethical strategy so I would recommend trying to empathize with their position and the thoughts that they are having.

The third lesson I learned was to be flexible and open-minded rather than stubborn about how the research should be. No matter how accustomed you are to doing research and think you have designed it with all possibilities in mind, things will arise that you could not foresee. Burns’ ‘the best laid plans of mice and men’ comes to mind. Conducting doctoral research is as much about learning how to do research, as it is about researching your given topic. I was adamant that I would include the women who participated in my research in all aspects of decision making, and that this would mitigate the harm that could come from foregoing anonymity. I had not anticipated the degree to which I might have to lead the decision making, whether due to time constraints or because the women involved might want me to. It was only through conversations with my supervisors and support networks, and responding to the UERs, that I was able to reflect on this. I needed to be open-minded to what issues may arise during the research that I had not or could not anticipate.

The final reflection I have is that I feel research RECs are not constituted to give equal consideration to the ethics of participatory research. There is a conflict between the procedures and the principles. Certainly, I recognize that it might not only be participatory researchers who are constrained by this process; it may be that RECs are also constrained. We must have policies in place to protect people from the worst that research can offer. However, sometimes harm can occur when the ethical principles enshrined in ethics committees are fully adhered to. This is evident in critiques by disability, feminist, and emancipatory scholars of positivistic and traditional research methods (cf. Beresford, 2003; Stanley & Wise, 1993). This puts into question what the role of RECs is and should be. Hedgecoe (2016) has highlighted that the behavior of such committees can sometimes be orientated toward reducing risk and protecting reputations. This can restrict academic freedom, and is not necessarily the best way to protect people participating in research. Service user-led researchers and disability scholars advocate ethical procedures that facilitate collaborative inclusion and involvement from those in research (e.g., Faulkner, 2004; Glasby & Beresford, 2007). The challenge for participatory researchers is how to be part of developing these strategies for research.

Conclusion

In this case study, I have outlined an ethical quandary that resulted from applying for ethical approval to do a participatory study into women’s experiences of pornography. I hope that this case study can contribute toward discussions of how we can reconcile the friction between participatory ethical considerations and the traditional ethics of sociological research. There is a clear need for RECs to be more accommodating toward participatory research. The key lessons I took from the process are that it is necessary to apply for ethics with a clear and concise plan. It is important to draw people participating in research into ethical considerations and facilitate where possible their agency in these choices. Finally, I think it is necessary to have an ethical strategy that complements your research aims and objectives. In my case, making anonymity a choice is important both for the co-productive nature of the research and for challenging how we talk about sex and pornography in our society.

The process of seeking ethical approval was a frustrating one but, ultimately, one that made me develop a more rigorous ethical strategy. I wish to thank the UERs for facilitating this process. I can see that they were supporting me to develop my research, and doing their role in pre-empting ethical issues that could arise for the women involved in my research. Although we may have difference viewpoints on the best ethical strategy, it is this difference in viewpoint that allowed me to reflect on the strengths and weaknesses of my own. This was an important process for me to develop my research.

The question is, then, how can those involved in research be given agency over the research process they are part of? The UERs highlighted to me that not all people will know about the norm of anonymity within research. I realized I had assumed that people would know about anonymity in the research process; I am accustomed to this because of my academic experiences and background. It is my responsibility to share this information with the women involved in the project so that they can make an informed choice. However, at the same time, I believe we should not assume ignorance, as we do not know what people’s backgrounds are or what their position on research ethics might be. The reviewers’ comments enabled me to reflect on my own implicit assumptions and, subsequently, I was able to develop a better strategy for gaining informed consent with clearer information. Nevertheless, I do believe the support and information given by the researcher should be balanced by enabling people to ultimately make choices and exercise agency over their involvement. I believe the ethical thing to do is facilitate the choice, not to restrict it as the reviewers suggested, and not to just assume it would be an informed choice, as I was originally doing.

Exercises and Discussion Questions

• 1.
  What tensions arose between the ethics of participatory research and the ethical principles within the ethics research committee? Have you seen these tensions in your research?
• 2.
  How can researchers develop ethical strategies that complement their research aims and objectives?
• 3.
  How can people participating in research be included in ethical decision making? What might the barriers to this inclusion be?
• 4.
  In my situation, I was able to challenge the decision to make anonymity compulsory. How can I have tailored my research if I had been unable to challenge this?
• 5.
  I recognize that I needed a clearer ethical application to begin with. What are the features of a robust ethics application?