May 28, 2020

New Ethics Questions and 21st Century Genomics

The Hastings Center will host a special virtual discussion, “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 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, a Hastings Center fellow who is president of the Social Science Research Council and the Harold F. Linder Professor at the Institute for Advanced Study in Princeton, will consider some of the new ethical questions facing scholars, policymakers, and the public and will suggest some perspectives that might be more apt for contemporary dynamics. The virtual discussion will take place on Thursday, June 4, at 11:30 a.m. Eastern time. Learn more and register.

Experiencing Community in a Covid Surge

“As I organize a pile of ethics consult chart notes in New York City in mid‐April 2020, I look at the ten cases that I have co‐consulted on recently,” begins an essay in the latest Hastings Center Report by Debjani Mukherjee, a clinical psychologist and clinical ethicist at Weill Cornell Medical College. “Nine of the patients were found to be Covid positive. The reasons for the consults are mostly familiar—surrogate decision‐making, informed refusal of treatment, goals of care, defining futility. But the context is unfamiliar and unsettling. Bioethicists are in pandemic mode, dusting off and revising triage plans. Patients and potential patients are fearful—of the disease itself and of the amplification of health disparities and inequities. There is so much to contemplate, but as I go through my cases, I worry about disability, about biases and racist stereotypes. In this pandemic, historically marginalized communities are at risk of further disenfranchisement.” Read the article for free.

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