by Rebecca Boxhorn, JD, Research Associate at the Consortium on Law and Values in Health, Environment & the Life Sciences at the University of Minnesota
In her Pillars of PRIM&R Keynote Address at the 2012 Advancing Ethical Research Conference, Professor Elyn Saks gave a moving and thoughtful description of her struggles with schizophrenia and how her experiences might shed light on research ethics. Professor Saks read excerpts from her nationally bestselling memoir The Center Cannot Hold: My Journey Through Madness, which portrays the symptoms and stigmas of “grave” schizophrenia. Saks described a particularly striking account of a breakdown she suffered during her studies at Yale Law School. As a law school graduate myself, I can attest that the process is difficult enough without psychotic episodes, paranoid delusions, and hallucinations. Saks, however, faced an even greater burden with her illness in addition to the rigors of the legal academy.
Beyond the recounting of her struggles, however, Saks made persuasive arguments for ethical and compassionate treatment and research of individuals with psychiatric disorders. Saks argued that she and others like her “are not schizophrenics, but people with schizophrenia.” The “otherization” of those with psychiatric disorders damages psychiatric patients and psychiatric research. Saks made cogent arguments for how her and others’ struggles can inform research ethics. One suggestion in particular seemed to strike a chord with the PRIM&R audience. Mental illness, unlike other medical conditions, faces an extreme burden of societal stigma, including the perception that those with these disorders are somehow “less than whole people.” To advance ethical research and treatment of individuals with such disorders, we need to eliminate the stigma.
In my work on return of research results and incidental findings, I often encounter concerns about stigma resulting from genetic and genomic research. A recent and illustrative example is the experience of the Havasupai Tribe of Arizona and the future-use of DNA research performed on them without their consent. After filing a lawsuit in 2004, the Havasupai members received a settlement of $700,000 from Arizona State University for harms resulting from the unauthorized study of traits carrying heavy cultural stigma, including inbreeding and schizophrenia. More generally, stigmatization and discrimination are often identified as tangible potential harms resulting from genetic and other types of research.
The refusal to participate in research based on resulting stigma is, of course, understandable. I wonder, however, how research is hampered by subjects seeking to avoid stigma Might objecting to research on stigmatized conditions, in fact, further embed these stigmas by slowing the progress of treatment and societal understanding of the conditions in question? What role do researchers play in eliminating stigma? How does that role relate to researchers’ obligations to their subjects? Are there ways to reveal results to individuals while also mitigating stigma for the individual? If so, what role should stigma play in evaluating the potential harm to participants? Professor Saks’ speech left me with more questions than answers, but in the best way possible. Perhaps the research community should endeavor not only to protect subjects from stigma, but also to eliminate it entirely.