Precision Medicine Research, ‘All of Us’, and Inclusion

A Discussion for Journalists • November 16, 2021

This is the third in a series "Genomics in Society: New Developments, New Questions: Discussions with Journalists" hosted by Hastings Center, in partnership with the Center for ELSI Resources & Analysis (CERA) of four online discussions to inform journalists about the ethical, legal, and social implications (ELSI) of new research in genomics; discuss story ideas on genomics and its ELSI issues; and connect journalists and ELSI experts and resources. 

The U.S. government is investing heavily to make precision medicine a reality—targeting preventive care and medical treatment to individual patients based on their genetic and other data. A major component of this effort of the National Institutes of Health’s “All of Us” Research Program, an unprecedented initiative to collect health-related data from at least one million people living in the U.S. to build a database of information from people of  many backgrounds, ages, geographic regions, gender identities, sexual orientations, and health statuses. This session will address the ethical, legal, and social issues of the massive the data collection that is essential to precision medicine research. What kinds of diversity are needed in precision medicine data sets? How can precision medicine research help overcome health inequities, such as systemic bias, lack of affordability, and obstacles to access? What are the clinical challenges to recruiting and retaining diverse participants? Why conduct precision medicine research when so many people lack access to even basic medical care? 

• Moderator: Nidhi Subbaraman, reporter, Nature
• Panelist: Sandra Soo-Jin Lee, chief of the Division of Ethics in the Department of Medical Humanities and Ethics at Columbia University, a co-principal investigator of the Center for ELSI Resources & Analysis (CERA), and a Hastings Center fellow
• Panelist: Carolyn Neuhaus, research scholar at The Hastings Center and a principal investigator on two projects concerning the All of Us Research Program
• Panelist: Katherine Blizinsky, policy director for the All of Us Research Program

Please see transcript on the upper right-hand corner of the page.

Related events

• Genomics, Human Behavior, and Social Outcomes – Watch the recording
• Law Enforcement and Genetic Data – Watch the recording
• Precision Medicine Research, “All of Us”, and Inclusion –  Watch the recording
• Addressing Racism in Medical Research and Publishing – Watch the recording

Beginning in 2021, The Hastings Center will offer an annual “bioethics for journalists” discussion series. It is supported by the Callahan Public Programs, named in honor of Daniel Callahan, co-founder of The Hastings Center. Each year, Hastings will join forces with a prominent partner to bring the most cutting-edge ethical issues in science and health to journalists.