Comment

Abstract

In an article published in 1995, one of us [AK] spoke of the “social course of epilepsy” to draw a specific contrast with the biomedical idea of a natural course of disease (Kleinman et al, 1995). The social course indicates that epilepsy develops in a local setting where moral, economic, and social institutional factors powerfully affect the lived experience of seizures, treatment, and their implications. Stigma is a major issue affecting epilepsy suffers and their families. The social course of epilepsy differs across contexts, and thus how stigma affects patients is also variable. This view expands upon the one put forth by Shostak and Ottman. The authors make a substantial case that exacerbated stigma and discrimination are possible outcomes of genetic testing for epilepsy. They raise important ethical questions about the normative justification for genetic information. Genetic information is important to the lived experience of epilepsy, because it can affect interactions with important others (such as doctors and family members). It can impact etiologic explanations, and, for some sufferers and family members, a genetic etiology might be disturbing. For others, genetic information might be consoling. Following Erving Goffman's classic work (1963), the authors see stigma as the social and cultural devaluation of an individual that happens because of labeling. It is essentially “spoiled identity,” and, by association, family members face “courtesy stigma.” Because genetic information can make epilepsy seem to “run in the family,” it can exacerbate stigma for families. This is a somewhat limited model of stigma. There is a new way of looking at stigma that is different than how it has traditionally been understood. Social scientists today see stigma as dynamic. It is a broad umbrella concept that links interrelated components, such as labeling, stereotyping, cognitive separation, emotional reaction, and discrimination (Phelan et al., 1998; Link et al., 2001, 2004). Anthropologists have emphasized an experience-near approach focused on contextual processes within which stigma is experienced. They offer a richer account of how people struggle to make sense of chronic disorder, provide material and emotional support, and elaborate a positive social persona in the face of devalued affliction (Good and Good, 1994). Sufferers are no longer seen as passive, and stigma is not seen as a static, rote outcome affecting patients and families equally. We want to suggest a broader reframing of stigma as an issue of “moral experience,” which goes beyond the classic sociological model. Moral experience refers to what is most at stake for people in a local world (such as a social network, neighborhood, workplace setting, or interest group). Stigmatized conditions threaten what really matters for sufferers (such as status, self-esteem, employment, health, intimacy, and relationships). And responses arise out of what matters to other people (such as family members, care givers, observers, and those doing the stigmatizing). What matters to these others can compound or allay stigma. Indeed, stigma can be a highly tactical response to perceived risk or danger, and this is what makes stigma so dangerous. To those who stigmatize, such a response often seems effective, natural, and even good. People stigmatize because what matters to them is thought to be in jeopardy, and stigmatizing is a powerful moral response to perceived uncertainty and danger. Stigmatized and stigmatizer inhabit shared social space and both have something at stake. Recent findings about stigma make more sense in this model than in the classic account. Because of the implications of perceived moral status, it is not just societal response that is stigmatizing. It is the family, health-care providers, and even sometimes the stigmatized themselves who become important sources of stigma (Lee et al., 2005a, 2005b). This reframing has important implications for epilepsy. The authors' general assertion that more research is needed on how genetic information affects stigma is an accurate one. And yet such research on stigma would have to be grounded in moral experience, emphasizing what really matters to sufferers, families, interlocutors, and even communities (Kleinman, 1999, 2006). The effect of genetic information depends upon what people make of it. Connecting genetic testing to health education, disability laws and services, and family- and work-based programs is crucial to this orientation. For research, this demands inquiring into the life of the stigmatizer as much as the stigmatized, as well as going beyond the idea that societal response is the only source of stigma. Only by beginning in the local microworld—where families, doctors, and patients are also a source of stigma—can we understand how stigma happens and, on that basis, pose normative questions about genetic testing.