New Ethical Questions and 21st Century Genomics
The Hastings Center hosted a special virtual discussion on “New Ethical Questions and 21st Century Genomics” on Thursday, June 4. After the atrocities of Nazi medical experimentation, the Nuremburg Code of the 1940’s established the importance of voluntary, informed consent by research participants. The Belmont Report of the 1970’s, as well as the original ethical, legal, and social implications (ELSI) framework of the Human Genome Project beginning in the 1990s, added additional guidance. Yet recent and emergent developments in genetics and genomics are posing challenges to these conventional ethical paradigms. Drawing from the examples of direct-to-consumer DNA testing and ancient DNA research, Alondra Nelson, president of the Social Science Research Council and a professor at the Institute for Advanced Study in Princeton, who is a Hastings Center fellow, considered some of the new ethical questions facing scholars, policy-makers and the public and will suggest some perspectives that might be more apt for contemporary dynamics.
The virtual discussion took place on Thursday, June 4.
Alondra Nelson, President of the Social Science Research Council and Harold F. Linder Professor at the Institute for Advanced Study in Princeton, is an acclaimed researcher and author, who explores questions of science, technology, and social inequality. Nelson’s books include The Social Life of DNA: Race, Reparations, and Reconciliation after the Genome, Genetics and the Unsettled Past: The Collision of DNA, Race and History (with Keith Wailoo and Catherine Lee), Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination, and Technicolor: Race, Technology, and Everyday Life (with Thuy Linh N. Tu).