Notwithstanding the previous comment, going through the ethical approval process has enabled me to become more aware of the general and specific moral and legal responsibilities I had towards the participants (Hallowell, Lawton and Gregory, 2005). The general responsibilities were crystallised in the Economic and Social Research Council’s (ESRC’s) Research Ethics Framework, which set out the following six principles to guide the conduct of its grant holders.
1. ‘Research should be defined, reviewed and undertaken to ensure integrity and quality. 2. Research staff and subjects must be informed fully about the purpose, methods and intended possible uses of the research, what their participation in the research entails and what risks, if any, are involved.
3. The confidentiality of information supplied by research subjects and the anonymity of participants must be respected.
4. Research participants must participate in a voluntary way, free from any coercion. 5. Harm to research participants must be avoided.
6. The independence of research must be clear, and any conflicts of interest or partiality must be explicit’ (Gilbert, 2008, p.178).
This section will explore how I used these principles to guide the PhD research project. The first consideration refers to having defined and reviewed research to ensure quality and integrity. The research design was enhanced through continuous critical supervisory scrutiny by my supervisors and by the Sociology Department’s Ethics Committee (University of Liverpool) who awarded the project ethical approval. Statements two and four concern the principle of informed consent and the importance of gaining it. Informed consent refers to the practice of recruiting research participants by providing them with as much information about the project as possible, including its aims, their involvement, any risks, what will happen to the findings and how their rights will be protected. Critical to this concept is that once individuals have full knowledge, they choose to freely give their consent to take part in the research. According to the British Sociological Association (2011), this implies a responsibility on the researcher to explain in detail and in a way which can be understood by participants, the nature and implications of the research. To comply with these statements I have provided varied forms of publicity about the nature of the research, i.e. verbal and written, and participants have freely given their consent to take part.
Starting with principle two, before I could send any publicity material out, it had to be passed by the University of Liverpool ethics committee. Once I started recruiting I sent copies of the approved participant information sheet, ethical approval letter and publicity flyer to facial support and single issue health organisations where people with an acquired facial ‘disfigurement’ might belong. One organisation requested and was given a copy of the completed 17-page University of Liverpool ethics form to evaluate before they gave consent to publicise the research on their website. When individuals who had heard about the research contacted me, I sent them another copy of the information sheet, which explained why the research was being conducted, who I was looking to interview, the implications of being involved and what would happen to the data. Regardless of whether people took part, they were also provided with a list of supportive organisations and their contact details. I spoke to most participants on the phone before the interview, to reiterate the contents of the information sheet, to allow them to ask any questions and to arrange an appointment to conduct the interview if they are still interested. Immediately prior to the interview commencing, I talked the participant through the information sheet, the narrative interview process and the informed consent form, i.e. their right to pull out of the interview at any point without explanation. After this point, I asked them to sign both copies of the consent form if satisfied, and to retain one for their records. After the interview had ended participants were verbally debriefed. I told them that the interview would be transcribed,
that they would get an anonymised copy. I did this for three reasons. Firstly, I wanted to give them something in return for their time and input. One of the participants said she would use it as a basis to write her life story. Secondly, for reasons of accuracy I wanted participants to comment on the transcript, to confirm the account or to add further detail, especially since the interview had been completed in one sitting and was therefore only an ethnographic snapshot, rather than a tripartite narrative interview encounter as Wengraf (2004) recommends. Thirdly, in keeping with ethical guidance I needed to provide participants with the opportunity to withdraw elements of the transcript or the whole account. I received comments back from less than half of the participants. They were mostly grammatical, or to elaborate slightly on a story. No one withdrew or contradicted anything they had said during the interview. One participant commented that he had been amazed how open he had been, another had found it ‘therapeutic’. All participants were provided with a summary of research findings early in 2014. Those that responded were positive about the experience.
The third ESRC ethical statement asserts that confidentiality and the right to anonymity must be respected. In compliance I anonymised the digital audio recordings and transcripts and made it clear to participants that the research data were being stored securely (encrypted and password protected). Identifying features were removed from quotes and conference presentations, also from academic papers when they are written. Whilst the participants’ right to confidentiality and anonymity must be protected, it can be assumed in research ethics applications and guidance that everyone will want to remain anonymous. The University of Liverpool allocation for ethical approval form (2011) was written on the assumption of preferred anonymity, so I was unable to give participants the option. However, with the movement towards visual research methods (Prosser, 2006; Tinkler, 2009) and a greater awareness of the merits of co-production (power sharing) between academics and participants (Martin, 2010; Roberts et al., 2012) the time has come for a re-examination of assumed participant anonymity in ethical guidance and applications (Tilley and Woodthorpe, 2011). Some people might want to be identified via their photograph or name. Changing Faces, an organisation I approached to publicise my research uses the faces of some of its members in online and printed media campaigns, to present positive role models of facially ‘disfigured’ people and to challenge stereotypes, for instance that facially different people are isolated and live hidden away. Allowing people to own their voice and face might make the research process more accountable from design to publication, and return some agency to those on which our careers are built. Furthermore, better research visibility particularly by
those labelled ‘vulnerable’ may contribute to greater public visibility, reduced ignorance and support for their right to freedom of expression (Fisher, 2011, p.12).
Finally, the fifth ESRC statement asserts that harm must be avoided. Whilst I do not wish to harm participants there is a research tension here. As a social scientist, I want to enable a group of marginalised people who have been under-researched and deemed ‘vulnerable’ (Fisher, 2011, pp.5-9) to be heard. In this respect the research provides an opportunity for people to open up about their lives, experiences and relationships. For most participants recollecting memories of the period during and after unhabitual facial change was painful, as their stories involved cancer diagnoses, existential crises, mental ill health, disrupted relationships and in some cases the death of a loved one. After one interview, a participant told me that she would feel ‘drained’ later as a result of recanting her story to me. Another said that in spite of the number of times she had told her story, it was always upsetting to relive it again. Whilst I have been unable to avoid distress caused through the biographical nature of the narrative method, I have tried to avoid the possibility of inflicting more serious harm to participants.
Narrative interviews allow people to talk in their own time and words about their experiences which stops the researcher from cutting across them with direct or painful questions (Chase, cited in Josselson and Lieblich, 1995). If people wish to disclose painful or emotionally resonant experiences, they do so of their own accord. To reduce harm stemming from the immediacy of a facial change experience I required that people only came forward if a two- year gap had elapsed between their facial change and the research inquiry. The information sheet also politely stated that if potential participants were undergoing treatment for a mental health condition, they would be excluded from taking part, along with anyone diagnosed with a moderate to severe mental health issue, regardless of treatment status. Additionally, on the information sheet I asked those interested in taking part to talk to their doctor (GP) if they were in any doubt of their fitness to take part. I let potential participants know that they could be interviewed with a friend, colleague, or relative if they wished, which was verbally reiterated prior to the interview beginning. In addition the information pack provided multiple contact details of two national facial support organisations (Let’s Face It, Changing Faces) and supportive guidance for facially ‘disfigured’ people designed by
Changing Faces. And to ensure that I did not inadvertently harm participants with inappropriate language I attended a training day delivered by Changing Faces on being sensitive to the needs of people living with a facial ‘disfigurement’ (16th March, 2011).
Whilst it is essential to recognise and mitigate against harm from occurring, there may be benefits from disclosing sensitive experiences (Wiles et al., 2007). As the authors note, the interviewee may not have had the opportunity to talk uninterrupted about what has happened to them and to have someone listen, either ever before or not for a long while. The process of telling might help them to make sense of their experiences or to explore a new chapter in their life. Telling a professional stranger could be cathartic and potentially improve their health/wellbeing. The interviewees know that the details of their story will be kept confidentially and there will be no personal reverberations, in the way that an exchange with a friend or family member might (Gilbert, 2008). Furthermore, taking part in the research and being able to add to knowledge and reduce social ignorance in the area of facial ‘disfigurement’ may leave the person feeling that they are contributing to the greater good in a research capacity or beyond. Stephen, who felt that his life had been ‘ruined’ by acne rosacea strongly desired that his story be told if it could help to alleviate the suffering of others (though making people more sensitive to appearance differences). Andrew said that if he hadn’t been burned and told his story publicly, about the struggles he faced afterwards, that two little girls and a mother might not be alive now, as the mother (who had also been burned), had written to him on the verge of killing herself and her children. She had later informed him that their correspondence had helped her through a period of deep depression and suicidal thoughts. Two more participants stated that they had found the encounter beneficial in the aftermath of the interview. When returning an annotated interview transcript with comments Clara wrote that she had found the encounter ‘very therapeutic as I let go of some things I hadn’t talked about’ (2012). Responding to a summary of research findings in early 2014 Jonathon hoped that the work would enhance public understanding: ‘Thank you for including us in your studies. It was a pleasure to help in understanding more about people living with facial disfigurations and your work can only further improve public opinion and understanding’.
Chapter Summary
To conclude, I concur with Hallowell, Lawton and Gregory (2005) who argue that the rise of a politically motivated, bureaucratic research governance/ethics culture has narrowed the field of ethical commentary. Issues such as the prediction of ‘unnecessary’ risk, discussions surrounding informed consent, and a concern with participant confidentiality have been awarded an elevated status. The authors (2005) argue that these issues are important, but
that we need to remain flexible, reactive, and accountable for all of our actions, not just as researchers but as morally responsible selves (Bauman, 1993, cited in Hallowell, Lawton and Gregory, 2005). My PhD project has been peer-reviewed and conforms to ESCR ethical guidance. However, I have argued that a discussion needs to occur about the assumptions underpinning research anonymity. In addition, that it is impossible to prevent the harm of reliving the experience from occurring whilst creating rich original data and completing the second research objective. In closing, I concur with the sentiments of Hallowell, Lawton and Gregory (2005), who argue that we need to see ethics as an integral aspect of the whole research process. This is why many of the less complex moral issues relating to this project are located throughout the thesis in context as they arise.
‘We need to see ethics as an integral feature of all aspects of our research, from dreaming up a research question, designing the study, securing funding, negotiating access, recruiting participants, gathering and analysing the data to reporting our findings’ (Hallowell, Lawton and Gregory, 2005, p.151).