A key component of informed consent to participate in medical research includes understanding that research is not the same as treatment.

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Medical researchers and clinicians increasingly understand and present eating disorders (anorexia and bulimia nervosa) as biologically-based psychiatric disorders, with genetic risk factors established by high heritability estimates in twin studies. But there has been no research on interpretation of genetic involvement by people with eating disorders, who may hold other views. Their interpretations are particularly important given the frequent presumption that biogenetic framing will reduce stigma, and recent findings that it exacerbates stigma for other mental illnesses. To identify implications of genetic framing in eating disorders, I conducted semi-structured interviews with 50 US women with a history of eating disorders (half recovered, half in treatment; interviewed 2008–9 in the USA). Interviews introduced the topic of genetics, but not stigma per se. Analysis followed the general principles of grounded theory to identify perceived implications of genetic involvement; those relevant to stigma are reported here. Most anticipated that genetic reframing would help reduce stigma from personal responsibility (i.e., blame and guilt for eating disorder as ongoing choice). A third articulated ways it could add stigma, including novel forms of stigma related to genetic essentialist effacing of social factors. Despite welcoming reductions in blame and guilt, half also worried genetic framing could hamper recovery, by encouraging fatalistic self-fulfilling prophecies and genetic excuses. This study is the first to elicit perceptions of genetic involvement by those with eating disorders, and contributes to an emerging literature on perceptions of psychiatric genetics by people with mental illness.

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The conduct of clinical research often involves two distinguishable sets of relationships: the researcher-subject relationship, and the clinician-patient relationship. Some scholars argue that being a patient in a clinical care setting and a subject in a research study are so different that anything that would promote in subjects the view that they are in clinician-patient relationships is exploitative and deceptive. This paper presents findings intended to initiate a more empirically-based discussion of this issue. Using data from 82 in-depth interviews with physician-investigators, nurse-study coordinators and patient-subjects in early phase clinical trials, we find that research personnel are likely to be seen, and to see themselves, as clinical caregivers. We also find evidence that while researchers and subjects often tend to view care and research as conflicting activities, both parties tend to see research as a way of caring for patients. We found no relationship, however, between subjects' perception of care-giving by researchers and the tendency to misunderstand that they are in a research study. Because research, by necessity and inclination, is unlikely ever to be 'care-free', we recommend that the ethical debate surrounding the danger of confusing research with treatment take into account the kinds of care described by respondents.