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.

Public Health Relevance

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.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
5P50HG007257-02
Application #
8708929
Study Section
Special Emphasis Panel (ZHG1-HGR-P (J1))
Program Officer
Mcewen, Jean
Project Start
2013-08-01
Project End
2018-05-31
Budget Start
2014-06-01
Budget End
2015-05-31
Support Year
2
Fiscal Year
2014
Total Cost
$1,039,290
Indirect Cost
$322,639
Name
Columbia University
Department
Psychiatry
Type
Schools of Medicine
DUNS #
621889815
City
New York
State
NY
Country
United States
Zip Code
10032
Appelbaum, Paul S; Fyer, Abby; Klitzman, Robert L et al. (2015) Researchers' views on informed consent for return of secondary results in genomic research. Genet Med 17:644-50
Raad, Raymond; Appelbaum, Paul S (2015) Impact of behavioral genetic evidence on the perceptions and dispositions of child abuse victims. Public Health Genomics 18:9-Nov
Appelbaum, Paul S (2014) The double helix takes the witness stand: behavioral and neuropsychiatric genetics in court. Neuron 82:946-9
Schiffman, Jason; Lawrence, Ryan E; Demro, Caroline et al. (2014) Attitudes towards cannabis use and genetic testing for schizophrenia. Early Interv Psychiatry :
Klitzman, Robert; Appelbaum, Paul S; Chung, Wendy K (2014) Should life insurers have access to genetic test results? JAMA 312:1855-6
Appelbaum, Paul S; Parens, Erik; Waldman, Cameron R et al. (2014) Models of consent to return of incidental findings in genomic research. Hastings Cent Rep 44:22-32
Klitzman, Robert; Abbate, Kristopher J; Chung, Wendy K et al. (2014) Views of preimplantation genetic diagnosis among psychiatrists and neurologists. J Reprod Med 59:385-92
Henderson, Gail E; Wolf, Susan M; Kuczynski, Kristine J et al. (2014) The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations. J Law Med Ethics 42:344-55
Klitzman, Robert; Abbate, Kristopher J; Chung, Wendy K et al. (2014) Psychiatrists' views of the genetic bases of mental disorders and behavioral traits and their use of genetic tests. J Nerv Ment Dis 202:530-8
Poduri, Annapurna; Sheidley, Beth Rosen; Shostak, Sara et al. (2014) Genetic testing in the epilepsies-developments and dilemmas. Nat Rev Neurol 10:293-9

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