Vololona Rabeharisoa

Centre de sociologie de l’innovation, Mines Paristech

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“Who cares? Combining genetics and psychiatry to explore the shadow zones of autism”

The upsurge of genetics and genomics in medical specialisms raises as many hopes as fears. The identification of genes, and now of genomic variations, which are likely involved in a variety of conditions, opens the way to the exploration of new therapeutic targets along genomic pathways. The pervasiveness of this paradigmatic shift is also questioned for the risk of “geneticization” of diseases and life it potentially induces. Worries are particularly intense in the field of psychiatry, whose relationship with somatic medicine is continuously fraught with moral and epistemic conflicts. In the French context, where psychiatry has long been embedded in the psychodynamic tradition, the rationale for connecting genetics to psychiatry is strongly disputed. Interestingly, it was within this context that an experimental series of multidisciplinary medical consultations associating geneticists-paediatricians, psychoanalysts and psychiatrists with a psychodynamic background, developed in the late 1990s in Paris and its close surroundings. These consultations, which are going on today, aim to find out what adolescents who were labelled “autistic” in their childhood but whose clinical pictures cast doubts, actually suffer from. My presentation draws on fieldwork I conducted in the mid-2000s, at a time when the professionals involved in these consultations strived to institutionalize their collaboration and to convince their fellow colleagues of the benefit of articulating genetics to psychiatry for patients and their families. Indeed, one major criticism that these consultations confronted pertained to the issue of care.  Certain psychiatrists vehemently argued that not only genetics cannot help to find a cure for such a complex condition as autism, but also and most importantly, that geneticists are unable to offer valuable care for concerned patients. Conversely, certain geneticists were much dubious about working with psychiatrists and psychoanalysts, and considered that geneticists should rather put their efforts in the quest for the genes of autism. Drawing on my field notes and interviews with professionals and families, my presentation provides empirical data and analysis on how these consultations were actually performed and on what they did to the actors involved in. More specifically, I show how geneticists, psychiatrists and families together put to the fore and elaborated on facts and events that nobody cared about so far because they did not fit into existing corpus of knowledge. I then show how this collective exploration gave rise to “known-unknown” medical problems and put to the trial original combinations of care practices tailored to each adolescent’s situation, ranging from on-going medical investigation and monitoring to the integration of various branches of psychiatry psychotherapy, sensorial psychiatry, etc.) and paramedical care. It is this renewed attention to what should count as appropriate care in highly uncertain medical situations that the leading geneticist involved in these consultations aimed to highlight by reclaiming genetics as a “soft medicine”, amenable to multiple arrangements with different approaches to care. In the conclusion, I offer a few thoughts on this provocative and radical view on genetics and its relationship with psychiatry.

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