Abstract
Psychiatric genomics is made in practice. Developments in psychiatric genomics are the result of an open, contingent process in which different stakeholders – scientists, policymakers, professionals and patients – are involved. This article examines the practices and perspectives of scientists in two long-term, large-scale Dutch psychiatric research consortia that are mapping the origin and development of psychosis, anxiety and depression. The article also explores the perspectives of the funding agency and patients and patient organizations that are in contact with the research consortium on psychoses. What are the issues and concerns of scientists involved in psychiatric genomics, what do they expect genomics will mean for psychiatry, what kind of research are they conducting? What are the issues, concerns and expectations of the main funding agency? How do patients and patient organizations regard developments in psychiatric genomics, and how do they relate to the ongoing research? The conclusion is that different psychiatric futures – not necessarily resulting in geneticized disorders – may emerge from multiple developments in the field. Developments in this case study appear to be contingent on international developments in scientific research; on scientists’ different perspectives of what psychiatric disorders are; on national and European traditions in psychiatry, and on the input of patients and patient organizations into research.
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Notes
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GROUP (Genetic Risk and Outcome of Psychosis) is the consortium that is conducting research into the factors that can make individuals vulnerable to a non-affective psychosis or factors that can protect them against such a psychosis. The collaboration involves a total of four university medical centres (AMC Amsterdam, Groningen, Utrecht and Maastricht) and 33 Dutch mental health institutions. The research commenced in May 2004, the recruitment of subjects is now complete, and the database includes over 3000 individuals. NESDA (Netherlands Study of Anxiety and Depression) is researching the aetiology and course of depression and anxiety, having got under way in August 2004. Three academic medical centres are involved in the collaboration (VU Amsterdam, Groningen and Leiden), together with 8 mental health institutions and several other institutions, including client interest groups. Here too, the enrolment of subjects is now complete. The NESDA database encompasses some 3000 people. Both studies will run until 2012. See: www.group-project.nl and www.nesda.nl.
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The names of all respondents in this article, scientists and patients, are fictitious.
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Although patients consider the link between psychosis and trauma important, it is anathema to many psychiatric researchers since they do not wish to become embroiled, once again, in hypotheses suggesting that there may be a link between the parents’ behaviour and psychosis in their children. This hypothesis has now resurfaced in the scientific community – albeit in combination with a genetic susceptibility to psychosis.
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On an overall level there are no differences to be pointed out between GROUP and NESDA. The differences in NESDA are less sharp for two reasons: (1) anxiety and depression are common disorders with both minor and major forms of expression, while psychoses are considered to be major disabling disorders; (2) there is no NESDA member that represents a ‘hard core’ biological perspective.
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From a historical viewpoint there is nothing new here. Freud already spoke of an Ergänzungsreihe (‘complementary series’) of endogenous and environmental factors involved in mental disorders. The point here is that despite all this, under the influence of the Human Genome Project, biological psychiatry in the 1990s and early twenty-first century saw a wave of genetic reductionism. A possible explanation might be found in the fact that shifts in dominant explanations of mental disorders during the last century – from psychoanalytical and social psychiatric to biological perspectives – often involved firm standpoints and animosity between competing professional communities. This situation fostered extreme standpoints, biological as well as social ones (Shorter, 1997).
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The psychoanalytical perspective in the bio-psycho-social model in the Netherlands has been marginalized, and came in for harsh criticism in the interviews. Rivers, for example, dubbed the psychoanalytical perspective on autism in French psychiatry as ‘criminal’. Psychology mostly means cognitive psychology.
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There is a debate in the philosophy of psychiatry about whether we need naturalistic categories to answer the question ‘what is mental disorder’. Bolton (2008) defends the viewpoint that a disorder comes about through personal suffering and social demarcations between ‘normality’ and ‘abnormality’.
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It is known that several heterogeneous factors both genetic and environmental are implicated in the manifestation of high blood pressure. It is often difficult to determine whether a person's blood pressure is too high for that particular individual. According to Rivers, the same also applies in the case of psychiatric symptoms.
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Once the International Evaluation Committee of ZonMw had identified the lack of patient participation as a weak point in the GROUP project, the GROUP board decided to rectify this situation by setting up a Patients involvement committee, including scientists, research assistants and members of Anoiksis and family organization Ypsilon (see below). Plans have been made (not yet executed) to develop a Top ten of research questions from a patient's and family's perspective that could be answered by using GROUP's huge database.
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Acknowledgements
I thank GROUP, NESDA, Anoiksis, Ypsilon and ZonMw for their inspiring collaboration. The Mental illness, genomics and society project is part of the research programme of the Centre for Society and Genomics, based in Nijmegen, the Netherlands, which is funded by the Netherlands Genomics Initiative, in The Hague, the Netherlands.
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Baart, I. The contingency of psychiatric genomics in a Dutch research consortium. BioSocieties 5, 256–277 (2010). https://doi.org/10.1057/biosoc.2010.2
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DOI: https://doi.org/10.1057/biosoc.2010.2