Advances in personal genetics and GINA:
Expanding options and protecting civil rights
Organized by the Personal Genetics Education Project, Harvard Medical School
In cooperation with the offices of Congresswoman Louise M. Slaughter and Senator Elizabeth Warren
October 3, 2014
This briefing was the second in a series that pgEd was invited to organize on personal genetics, as a safe and fair integration of genetics into society will require an informed public, in which all individuals are aware of the benefits and implications of personal genetics.
Mildred Cho, PhD, Associate Director, Stanford Center for Biomedical Ethics; Professor of Pediatrics, Stanford University
James P. Evans, MD, PhD, Bryson Distinguished Professor of Genetics and Medicine, UNC School of Medicine; Director of Clinical Cancer Genetics, UNC Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill
Nita Farahany, JD, PhD, Member, Presidential Commission for the Study of Bioethical Issues; Director, Duke Science and Society; Director, Duke MA in Bioethics & Science Policy; Professor of Law and Philosophy, Duke University
Jessica L. Roberts, JD, Assistant Professor of Law, University of Houston Law Center
Pardis Sabeti, MD, PhD, Associate Professor of Organismic and Evolutionary Biology, Center for Systems Biology, Harvard University; Associate Professor of Immunology and Infectious Disease, Harvard School of Public Health; Senior Associate Member, Broad Institute
Ting Wu, PhD, Professor of Genetics, Harvard Medical School; Director, Personal Genetics Education Project
The briefing began with an update on recent advances in genetic technologies and then featured the latest research from the front lines of the Ebola outbreak, highlighting how scientists are using sequencing as a tool towards curbing this epidemic. It then focused on the Genetic Information Nondiscrimination Act (GINA), wherein a panel of experts looked ahead to new challenges arising from developments in technology, medicine, genetics, neuroscience, and beyond, highlighting the opportunities and implications for civil rights brought about by the era of personal genetics and the memory of the country’s earlier experience with eugenics.
The mission of pgEd is to raise awareness of the benefits and implications of personal genetics and make that awareness equally accessible across all segments of society regardless of socioeconomic, educational, ethnic, religious, or cultural background. Its goal is to instill the confidence in individuals to ask questions, make informed decisions, and respect the opinions of others.
For further information, contact Marnie Gelbart at (617) 432-1797 or mgelbart@pgEd.med.harvard.edu.