The contingency of psychiatric genomics in a Dutch research consortium

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.

Patient participation in fundamental psychiatric genomics research: a Dutch case study

“…GROUP genomics research started therefore with scientists conducting heated and technical discussions against a background of rapid international developments. This situation meant that some scientists were, for quite some time, wary of contact with the outside world – they hoped to overcome their differences before communicating their research to outsiders 12,13 …”

“…the environment) has been found to have a crucial bearing on many phenotypic characteristics. The GROUP psychiatrists agree on that, but differ fundamentally as to the best way forward to address this complexity 12,13 …”

“…There are dreams and high hopes for the future, but the actual application of genomics is very low, and, in the case of psychiatry, absent. It is generally far from clear how genomics will transform the meaning and management of psychiatric disorders, as it is not clear whether patients will benefit from it, or which patients will, and which not 12,13,22 . The results of genomics research are contingent, they are creating an unknown future with as yet ‘unknown’ psychiatric subjects.…”

“…This situation meant that some scientists were, for quite some time, wary of contact with the outside worldthey hoped to overcome their differences before communicating their research to outsiders. 12,13 Scientists in genomics had initially been enthralled by the One Gene One Disease (OGOD) model, which predominated until around 2005. The discovery that HuntingtonÕs disease is caused by an abnormality in a single gene had fuelled hopes of glorious cures for other psychiatric disorders.…”

“…The GROUP psychiatrists agree on that, but differ fundamentally as to the best way forward to address this complexity. 12,13 As a result, a large-scale, long-term national research consortium into psychiatric genomics came into being. However, the up-scaling continued, resulting in a globalization of the research, with important funding from organizations in the United States and collaborations with psychiatric research consortia throughout the world.…”