This application proposes the establishment of a Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral (PNB) Genetics at Columbia University Medical Center (CUMC). Since April 2010, we have been funded under a P20 Developing Center grant to create the infrastructure and begin development of such a Center. PNB genetics present particular ethical, legal and social challenges because of the highly stigmatized nature of many PNB disorders and traits; the potential impact of genetic predispositions for PNB disorders and traits on perceptions of responsibility for behavior; and the complex interactions between genetic propensities and environmental influences that determine the onset and course of many PNB disorders, rendering the implications of many PNB genetic data inherently ambiguous. Our new Center will promote thoughtful consideration of the range of issues arising in the context of PNB genetics and develop innovative approaches to addressing them. Specifically, we will undertake a focused program of research that explores the impact of PNB genetic information at the individual, familiar and societal levels, considering its effects on stigma and self-image, attributions of responsibility, and responses to ambiguity, along with systematic consideration of the broader normative and policy implications of our findings. To maximize the value of our research, we will create robust mechanisms to translate the empirical and normative output of our research into recommendations for policy and practice, capitalizing on the involvement of other experts and key stakeholder groups. With an eye on the future of ELSI studies, we will develop a multidisciplinary post-doctoral training program focused on nurturing future leaders in ELSI research, creating an environment that facilitates cross-disciplinary learning and research and draws on outstanding mentors and teachers. In sum, we will create a structure that builds on our existing strengths and accomplishments to enhance transdisciplinary collaboration, facilitate the conduct of innovative research, and foster intellectual growth among both faculty and trainees.
Exciting advances in PNB genetics have improved understanding of the genetic bases for many psychiatric, neurodevelopmental, and neurodegenerative disorders. Rapid development of techniques for accessing this information, including non-invasive prenatal sequencing, promises to make PNB genetic data much more widely available. Hence, consideration of the ethical, legal and social impact of these data and identification of better means of dealing with them are of critical and urgent importance to public health and well-being.
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