Tracing decision points in the use of race, ethnicity and genetic ancestry as population descriptors in genomics research

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Sandra Soo-Jin Lee will discuss an empirical study of the use of population descriptors in precision medicine research and decision points in which investigators substitute and combine race and/or ethnicity and genetic ancestry. 

Overview of Presentation:

  • The recent NASEM Report on the use of populations descriptors in genomics research recommends against use of race and ethnicity when indicating genetic ancestry.
  • Drawing on qualitative data on five PMR projects, we identify multiple points across the research life course at which conceptual slippage and conflation between race and genetic ancestry occur.
  • We illustrate points of negotiations within and between research teams as investigators deliberate on the relevance of race and genetic ancestry for different analyses and contexts.
  • We argue that moving beyond race will require confronting the entrenched ways in which race is built into research practices and biomedical infrastructures.

    Sandra Soo-Jin Lee, PhD

    Professor of Medical Humanities & Ethics and Chief of the Division of Ethics

    Columbia University

    Sandra Soo-Jin Lee, PhD, is Professor of Medical Humanities and Ethics and Chief of the Division of Ethics at Columbia University. She received her undergraduate degree in Human Biology from Stanford University and her doctorate in Medical Anthropology from the joint UC Berkeley/UCSF program. Dr. Lee’s research focuses on the ethical and social dimensions of emerging biotechnologies, including the use of race, ethnicity and ancestry in genomics, precision medicine and AI applications in healthcare.  She is Co-Director of the NHGRI funded Center for ELSI Resources and Analysis (CERA) and is President of the Association of Bioethics Program Directors. She serves on the editorial boards of the American Journal of Bioethics and Narrative Inquiry in Bioethics and is a member of the US Health and Human Services Secretary’s Advisory Committee on Human Research Protections. 

    Mike Bamshad, MD (Moderator)

    Editor-in-Chief of HGG Advances

    Chief of the Genetic Medicine Division of the Department of Pediatrics at Seattle Children’s Hospital, University of Washington (UW), Director of the Center for Clinical Genomics, Principal investigator the UW Center for Mendelian Genomics


    March Journal Club
    03/13/2024 at 12:00 PM (EDT)  |  Recorded On: 03/13/2024  |  30 minutes
    03/13/2024 at 12:00 PM (EDT)  |  Recorded On: 03/13/2024  |  30 minutes HGG Advances Journal Club, March 2024