Project Summary/Abstract. This application proposes the continuation of a Center for Research on the Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral (PNB) Genetics at Columbia University Medical Center (CUMC), in collaboration with The Hastings Center. We have been funded since April 2010, initially under a developing center award and since 2013 as a full Center of Excellence in ELSI Research (CEER). This proposal builds on the foundation that we have created over the last 7-1/2 years, elaborating a set of empirical and conceptual/normative research activities and educational experiences that include a focus on identification of emerging ELSI issues in PNB genetics, translation and dissemination of our findings, and engagement of key stakeholders. Our work is based on the particular ethical, legal and social challenges presented by PNB genetics arising from its implications for: personal identity, including views of normality and pathology; perceived responsibility for behaviors related to health and reproduction, and moral choices; and ambiguity regarding the future, given the complexity of genetic and nongenetic influences on many PNB disorders. Although these characteristics are not unique to PNB genetics, they tend to be especially salient in psychiatry, neurology, and the study of behavior. Our Center will continue to 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 genomic testing in autism on individuals and families—as a potential model for other PNB disorders— considering its effects on identity, perceived responsibilities, and responses to ambiguity in life-trajectories, along with systematic consideration of the broader conceptual and normative 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. At the same time, we will implement a systematic approach to identifying emerging issues in the ELSI of PNB genetics, alerting ELSI researchers to these issues, and selecting a subset of issues for more intensive exploration. With an eye on the future of ELSI studies, we will develop a range of career experiences at key points along the ELSI pipeline, from undergraduates to faculty members. 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.

Project Narrative. Advances in psychiatric, neurologic and behavioral (PNB) genetics have brought the prospect of predictive and diagnostic genomic testing for many PNB conditions closer to clinical application. The potential for such findings to profoundly affect core elements of personhood—including identity, perceived responsibilities, and life trajectories—makes it essential to understand the impact of such information on individuals and families. Our Center will conduct innovative research regarding these issues, consider their clinical and normative implications, and help to train the next generation of ELSI researchers.