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  • Narrative research and service user/survivor stories:A New Frontier for Research Ethics?
  • Sarah Carr (bio)

Russo (2016) suggests that the personal narratives of those who have experienced mental and emotional distress now constitute a diverse and dispersed, nonetheless considerable, body of knowledge that is of interest to non–user/survivor researchers. The issues she raises about the potential use of that knowledge pose practical and ethical challenges to both user/survivor researchers and those from other research traditions. On reading this paper, I became conscious of my own work, where I have explored my personal experiences in the context of clinical research and the history of psychiatry (Carr, 2011, 2005). In one such piece, I describe myself as “a voice crying out from the data” (Carr, 2011, p. 32), and use my own ‘case’ to make the personal visible and to humanize the quantitative and statistical approaches to lesbian, gay, and bisexual mental health. My intention was to resist the historical erasure of lesbian, gay, and bisexual histories and lives and the demand that we must prove our numbers to have equality or rights. I have also argued for the potential of auto-ethnography as a methodology for creating individual narratives and collective knowledge (Carr, 2014). Yet, as I read Russo’s paper, I realized that, in sharing my own narrative, I could again be reduced to data by researchers who had not sought my consent or had attempted to engage in dialogue with me. My story could be decontextualized from its original purpose and authorial intention. I was also aware that, because I use academic discourse, this could afford me a degree of protection and privilege unavailable to those who share their stories in different ways. I was presented with an ethical dilemma and forced to consider more closely the ethics of research production from both sides.

In her discussion of intersectionality and user/survivor collective knowledge, Russo cites Patricia Hill Collins’s argument that knowledge “cannot be separated from the power relations in which it participates and which shape it” (2012, p. 453). Collins offers important theory for examining the original power relations in clinical research that Russo acknowledges. The foundations of ethical research ‘involving human subjects’ are embedded firmly in medicalized research dynamics based on the researcher/subject–physician/patient binary. The Declaration of Helsinki positions the researcher as the physician, whose activity requires regulation through a set of ethical principles because they are in a position of power and therefore [End Page 233] have the capacity to do harm (WMA, 2013). Indeed, the post-World War II Nuremburg Code was established in response to human atrocities carried out in the name of science (Zimmerman, 1997). Russo reminds us that the ethical issues of harm and consent are very live ones for user/survivor researchers considering using their own narratives as part of their research endeavor, and for anyone sharing their story in a way that could be used as ‘data’ and reinterpreted by others working uncritically in the physician/patient research dynamic. For user/survivor researchers, our ethical assumptions about ‘beneficence’ are challenged when our personal narratives are used by others without our consent: Could my personal account potentially harm others? What is the life of my story after I have found meaning from it? Does the publication of my story mean consent? As Russo suggests, user/survivor researchers who share personal stories must scrutinize their own work ethically with even greater attention as that work is now open to interpretation by non–user/survivor researchers operating in the context of medicalized research relations and which do not result in dialogical approaches. Equally, user/survivor researchers should engage in reflective and ethical approaches when using the personal narratives of others in our own work.

Certain sorts of ethical and reflexive research practice from qualitative research may provide ways of approaching some of the challenges Russo poses, for both user/survivor researchers and those who are not user/survivor researchers. Some qualitative social researchers are recognizing the political nature of their work and have a concern with social justice and the reduction of power relations between the researcher and the researched. Some wish to take...

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