Sandra Soo-Jin Lee, PhD

Profile Headshot

Overview

Sandra Soo-Jin Lee, PhD, is Chief of the Division of Ethics and tenured faculty in the Department of Medical Humanities and Ethics at Columbia University. Trained as a medical anthropologist, Dr. Lee has extensive experience leading multi-disciplinary bioethics research on race, ancestry and equity in genomics, precision medicine and artificial intelligence; governance of biorepositories and commercialization of biotechnology; and diversity in academic medicine and entrepreneurship. Her projects include The Ethics of Inclusion: Diversity in Precision Medicine Research (R01 HG010330), Beyond Consent: Patient Preferences for Governance of Use of Clinical Samples and Data (R01 LM012180) and Social Networking and Personal Genomics: Implications for Health Research (R01 HG005086). Dr. Lee publishes broadly in the genomics, medical, bioethics, and social science literatures, and co-edited Revisiting Race in a Genomic Age (2008), which resulted from a two year multi-disciplinary, cross-campus dialogue supported by the Andrew W. Mellon Foundation and the Stanford Humanities Institute. Dr. Lee is Co-PI of the newly launched national Center for ELSI Resources and Analysis (CERA) funded by the NIH/NHGRI, a collaboration between Columbia and Stanford with partners at the Hastings Center and Harvard University. Dr. Lee is also the co-Director of the NIH/NHGRI funded biennial International ELSI Congress.

Dr. Lee is a Hastings Center Fellow and has been an Economic and Social Research Council Bright Fellow at the University of Edinburgh, Wenner-Gren Foundation Faculty Fellow, a Rockefeller Foundation Fellow in Medical Humanities and a Resident Fellow at the School for Advanced Research. Dr. Lee has served as Chairperson of the Institutional Review Board at the Cancer Prevention Institute of California and on the NIH/NHGRI Coriell Consultation and Oversight Committee of the International Haplotype Map. Dr. Lee currently serves on both the Scientific and Bioethics Advisory Boards of the Kaiser Permanente National Research Biobank, the NIH/NHGRI Genomics and Society Working Group, and on the editorial board of Narrative Inquiry in Bioethics. Dr. Lee received her doctorate from the UC Berkeley/UCSF joint program in Medical Anthropology and her undergraduate degree in Human Biology from Stanford University.

Academic Appointments

  • Associate Professor of Medical Humanities and Ethics

Administrative Titles

  • Chief, Division of Ethics
  • Associate Director, Regulatory Knowledge and Support and Ethics Resource (RSKER) Columbia University Irving Institute for Clinical and Translational Research
  • Co-Director, Center for ELSI Resources and Analysis (CERA), NIH/National Human Genome Research Institute

Gender

  • Female

Credentials & Experience

Education & Training

  • PhD, University of California, Berkeley
  • BA, Stanford University
  • Fellowship: Stanford University

Research

Research Interests

  • Bioethics
  • Genetics
  • Health disparities

Grants

NIH/NHGRI R01 HG010330-01 Ethics of Diversity: Inclusion in Precision Medicine Research (PIs: Lee, S S-J -Stanford and Shim, J- UCSF)

NIH/NHGRI U13 HG010844-01 ELSI Biennial Congress (PI: Lee, S S-J - Columbia and Cho, M - Stanford)

NIH/NHGRI U24 HG010733-01 Center for ELSI Resources and Analysis (PIs: Lee, S S-J- Columbia and Cho, M-Stanford

NIH/NLM R01LM012180-01 Beyond Consent: Patient Preferences for Governance of Use of Clinical Samples and Data (PI: Lee, S S-J)

NIH/NHGRI R03HG010178-01 The Ethics of Inclusion: Conceptualizing Diversity in Genomics Research (PI: Lee, S S-J)

NIH/NHGRI R01HG005086-01 Social Networking and Personal Genomics: Emerging Issues in Health Research (PI: Lee, S S-J)

NIH/NCATS U01 RR025744 An Ethnography of Team Science: Case Study of Biodesign (PI: Lee S S-J)

NIH/NHGRI K01 HL72465 Distributive Justice and Human Genetic Variation Research. (PI: Lee, S S-J)

ELSI BIENNIAL CONGRESS (Federal Gov)

Jul 15 2019 - Jun 30 2024

ELSI.HUB: NATIONAL CENTER FOR ELSI RESOURCES AND ANALYSIS (Federal Gov)

Aug 13 2019 - May 31 2024

CENTERFOR RESEARCH ON ETHICAL, LEGAL & SOCIAL IMPLICATIONS OF PSYCHIATRIC, NEUROLOGIC & BEHAVIORAL GENETICS (Federal Gov)

Sep 17 2018 - Jun 30 2022

THE ETHICS OF INCLUSION: DIVERSITY IN PRECISION MEDICINE RESEARCH (Federal Gov)

Jan 1 2019 - Jun 30 2022

CLINICAL AND TRANSLATIONAL SCIENCE AWARD (Federal Gov)

Jul 1 2016 - May 31 2021

EXOME SEQUENCING IN DIVERSE POPULATIONS IN COLORADO & OREGON (Federal Gov)

Jan 1 2019 - May 31 2021

THE ETHICS OF INCLUSION: CONCEPTUALIZING DIVERSITY IN GENOMICS RESEARCH (Federal Gov)

Jan 1 2019 - Jul 31 2020

Selected Publications

Ethics of inclusion: Cultivate trust in precision medicine. Science (New York, N.Y.) Lee, S. S., Fullerton, S. M., Saperstein, A., Shim, J. K. 2019; 364 (6444): 941-42

"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research. Genetics in medicine : official journal of the American College of Medical Genetics Lee, S. S., Cho, M. K., Kraft, S. A., Varsava, N., Gillespie, K., Ormond, K. E., Wilfond, B. S., Magnus, D. 2018

Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research AMERICAN JOURNAL OF BIOETHICS Kraft, S. A., Cho, M. K., Gillespie, K., Halley, M., Varsava, N., Ormond, K. E., Luft, H. S., Wilfond, B. S., Lee, S. S. 2018; 18 (4): 3-20

Excavating difference: race in genomic medicine HANDBOOK OF GENOMICS, HEALTH AND SOCIETY, 2ND EDITION Lee, S.S, Gibbon, S., Prainsack, B., Hilgartner, S., Lamoreaux, J.2018: 221-27

Anticipating uncertainty and irrevocable decisions: provider perspectives on implementing whole-genome sequencing in critically ill children with heart disease. Genetics in medicine : official journal of the American College of Medical Genetics Char, D. S., Lee, S. S., Magnus, D., Cho, M. 2018

Trustworthiness in Untrustworthy Times: Response to Open Peer Commentaries on Beyond Consent AMERICAN JOURNAL OF BIOETHICS Kraft, S. A., Cho, M. K., Gillespie, K., Varsava, N., Ormond, K. E., Wilfond, B. S., Lee, S. S. 2018; 18 (5): W6-W8More

Institutional culture is the key to team science NATURE BIOTECHNOLOGY Lee, S.S., Jabloner, A.2017; 35 (12): 1212-14

A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent CLINICAL TRIALS Kraft, S. A., Constantine, M., Magnus, D., Porter, K. M., Lee, S. S., Green, M., Kass, N. E., Wilfond, B. S., Cho, M. K.2017; 14 (1): 94-102More

Studying "Friends": The Ethics of Using Social Media as Research Platforms AMERICAN JOURNAL OF BIOETHICS Lee, S.S.2017; 17 (3): 1-2