Investigating the Ethics of Polygenic Risk Scores: Short Course on ELSI Research at the Cutting Edge
co-sponsored by the Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
Polygenic risk scores (PRS) are being used increasingly to investigate neurologic and psychiatric disorders, as well as phenotypes such as intelligence and educational attainment. The widespread use of these scores raises a number of ethical, legal, and social issues (ELSI). In this short course, participants will learn about: the science underlying this new research, the ELSI questions that arise in the context of such research (e.g., informed consent, results disclosure, communication of uncertainty, application to influence behavioral change, stigma, policy implications), and the types of research approaches that could be used to address ELSI-related questions arising from use of PRS.
The Science of Polygenic Risk Scores
Eimear Kenny, PhD
Founding director, Center for Genomic Health, and Associate Professor of Medicine and Genetics, Icahn School of Medicine at Mount Sinai
Conceptual Issues in the Construction of PRSs
Lucas Matthews, PhD
Postdoctoral researcher co-sponsored by The Hastings Center and the Columbia Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
The Ethics of using PRSs to Study Social Outcomes
Erik Parens, PhD
Senior research scholar at The Hastings Center, director of the Center’s new Initiative in Bioethics and the Humanities, and steering committee member, Columbia Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
Study Designs and Approaches for ELSI Research on PRSs
Ruth Ottman, PhD
Professor of Epidemiology (in Neurology and the Sergievsky Center), Columbia University, deputy director, Columbia Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
Contact Information: Ruth Ottman, PhD
Professor of Epidemiology (in Neurology and the Sergievsky Center)
Deputy Director, Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics
Columbia University