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Short course co-sponsored by the Irving Institute for Clinical and Translational Research and the Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics

Return of Individual Results in Genomic Research: Ethical and Practical Considerations

September 7, 2018, 9AM-1PM

Irving Institute Educational Center Classroom (PH10-405A&B)

622 West 168th Street, Floor 10, NYC 10032

Historically, individual results from genomic research have been offered to participants only in exceptional cases (e.g., findings with serious and “actionable” health implications). This approach is consistent with the view that research is primarily aimed at producing generalizable knowledge rather than individual benefit. However, research participants value individual results, and many bioethicists have argued that offering to return individual findings is consistent with basic principles of beneficence, justice, and respect for persons.  A 2018 report by the National Academies of Sciences, Engineering, and Medicine evaluated these issues in depth and made recommendations intended to permit greater return of individual research results over time. This short course will introduce historical trends in this arena, ethical and practical considerations, empirical findings with actual return of results, and approaches for return of results in large-scale genomic studies such as the All of Us Research Program. Participants will become familiar with the major issues to consider when making decisions about return of results in their genomic research, and will have an opportunity to analyze the risks and benefits and the ethical, regulatory, and logistical challenges involved.

Course Directors:

Ruth Ottman, PhD

Professor of Epidemiology (in Neurology and the Sergievsky Center), and Deputy Director, Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Columbia University

Julia Wynn, MS, MS, CGC

Senior Genetic Counselor/Clinical Research Manager, Department of Pediatrics, Columbia University

Louise Bier, MS, CGC

Director of Genetic Counseling, Institute for Genomic Medicine, Columbia University

Please Note: The course is free but registration is required. Details on how to register will be sent out by email. Email Susan.Palma@nyspi.columbia.edu for updated information.