The Challenges of Informed Consent

Helen Gibb is a current OHMA student. In this post, she discusses the challenges associated with interviewing 'vulnerable populations.' Watch the full lecture by Drs. Tracy McDonough and Lynda Crane on YouTube.

[Image credit - http://www.schizophreniaoralhistories.com/]

[Image credit - http://www.schizophreniaoralhistories.com/]

Oral historians are versatile. We do not always specialize in the subject we are conducting interviews on. Instead, we rely on excellent interpersonal skills, a deep understanding of the interview space and, of course, an ability to conduct research when necessary. Empathy, a commitment to social justice or a desire to improve the historical archive are just a few reasons that explain the drive to begin a particular oral history project. But what if these reasons aren’t enough? What if there are some areas where oral historians, with a background in history, anthropology, or perhaps journalism, are simply not qualified to conduct interviews with a certain population group?

I raised this last question in a discussion with Tracy McDonough and Lynda Crane, two experienced clinical psychologists, before their talk on March 12 about their current project. Created in 2011, The Schizophrenia Oral History Project is the first of its kind. Stigma and misinformation within and outside the medical community have led to the belief that this mental illness leaves individuals unable to narrate their own lives. Thirty-five interviews later, Crane and McDonough have a fascinating collection of insights into the world-views of those living with the condition. Their website contains short extracts from interviews with messages for health practitioners and the wider public such as John, who, like many others, developed schizophrenia as a teenager: “I would just tell people to have an open mind because you really don’t know who you’re dealing with. I don’t know if most people would consider me crazy, but I just think I’m a normal person with good goals. So, just have an open mind and be willing to accept some flaws in people and look for some good." Much of their work with the project has involved educating mental health workers about living with the disease. Whether a result of lack of time to get to know individuals or simply poor education, this is a group who is still sorely misunderstood by the medical community.

Tracy and Lynda’s work represents an important goal of the oral history field by providing a platform for marginalized populations to advocate for themselves. Yet, for many of us (myself included) being an interviewer on this project would be off-limits, as Tracy explained to me:

Helen Gibb: I wondered if you think oral historians would be able to take on a project like this or was there something specific about your knowledge or experience with schizophrenia that you were able to take it on in a way that was safe and protective?
Tracy McDonough: This is something I feel very strongly [about]. When you're working with vulnerable populations, I think you need to have background and training. Not necessarily doctoral level but you have to have a background working with folks who have had the experiences. Whether it's rape victims, domestic violence, or schizophrenia. Practical things - how do I put a lavalier mic on a rape victim?
Oral historians have very important training but I think certain pockets of the population, I argue, really do require that. We've had several folks approach us who want to get stories for us and we always say no. It's not that we don't want anyone doing the work but if someone doesn't have a mental health background I think that can be problematic. Especially folks with schizophrenia. You have the added layer of needing to assess whether they're cognitively intact to give informed consent. Because with this type of mental illness reality testing- 'Do I know I'm here and do I know what's going on is real or in my head?'- that vacillates. Folks can have very lucid time periods but also times when that's not the case.

McDonough and Crane’s concerns are very real and they articulated them to the oral history community in their Oral History Review article. Informed consent is an ethical and legal imperative for oral historians, however it is usually focused on ensuring that interviewees are fully aware of what their interview is for, how it will be archived as well as any possible future uses. Our commitment to vulnerable populations demands that we take seriously the limitations of our ability to judge capacity to consent.

This doesn’t have to prevent us working with individuals or groups similar to those in The Schizophrenia Oral History project. A timely example of this is Columbia University Oral History masters alum, Sam Robson. His work interviewing people with dementia resulted in a play entitled Timothy and Mary, a staged reading of which was performed as part of this years’ workshop series on oral history, medicine and health. Manhattan Repertory Theater will host a full performance on May 14 and 15.

Much like those with schizophrenia, informed consent from people with dementia means ensuring first and foremost that individuals are aware they’re being interviewed. Without a mental health background, Sam relied on collaboration with a social worker. They would attend interviews and make assessments, allowing him to conduct interviews knowing his narrators were protected from further harm. This relationship between oral historians and health professionals is one he feels could be replicated in future projects. As Sam found, the challenge for the oral historian is knowing something of the potential harm of interviewing and deciding how consent will be taken - verbal, written or through a proxy.

In the end, the social worker had few concerns about the project, undoubtedly thanks to the awareness that Sam, and interviewers like him, have and the measures they take to mitigate harm. Oral historians have always ventured into unknown territory but we cannot do it alone. Partnerships with mental health professionals will make our practice stronger and ensures we continue to offer a much-needed service through challenging stigma and curtailing the othering that has long afflicted those with mental health issues.