Our Team
Leadership and Faculty
Sandra Soo-Jin Lee, PhD
- Chief, Division of Ethics
Sandra Soo-Jin Lee, Ph.D., is Chief of the Division of Ethics and tenured Professor 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, the NIH/NHGRI Coriell Consultation and Oversight Committee of the International Haplotype Map and the NIH/NHGRI Genomics and Society Working Group. Dr. Lee currently serves on the US Department of Health and Human Services Secretary Advisory Committee on Human Research Protections, the Scientific and Bioethics Advisory Boards of the Kaiser Permanente National Research Biobank, and the Scientific Advisory Board of the Human Pangenome Consortium. In addition, Dr. Lee is President-elect of the Association of Bioethics Program Directors and serves on the editorial boards of the American Journal of Bioethics and 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
- Professor of Medical Humanities and Ethics
Administrative Titles
- Chief, Division of Ethics
- Director, Team Expertise and Management Support (TEAMS) Columbia University Irving Institute for Clinical and Translational Research
- 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
- Co-Director, International Biennial ELSI Congress
- President-elect, the Association of Bioethics Program Directors
Education & Training
- PhD, University of California, Berkeley and UCSF
- BA, Stanford University
- Fellowship: Stanford University
Research Interests
- Bioethics
- Medical Anthropology
- Genetics
- Health equity and 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)
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
Maya Sabatello, LLB, PhD
- Associate Professor of Medical Sciences (in Medicine and in Medical Humanities and Ethics)
Maya Sabatello, LLB, PhD is an Associate Professor of Medical Sciences (in Medicine) at the Center for Precision Medicine and Genomics, Department of Medicine; Associate Professor (in Medical Humanities and Ethics), at the Division of Ethics, Department of Ethics and the Humanities; and Co-Director of the Precision Medicine: Ethics, Politics, and Culture Project at Columbia University. She is a former litigator with trans-disciplinary background and has extensive experience in national and international policy-making relating to human and disability rights. Sabatello studies how biomedical technologies and genomic information impact social structures, marginalized communities, and individual rights and health outcomes. Her scholarship focuses on law, society, medicine, and disability; regulations of reproductive technologies; and the ethical, legal, and social implications of genetics and precision medicine. Her projects include Disability, Diversity and Trust in Precision Medicine Research (R01 HG010868), Evidence-based Policy Recommendations to Address Bioethical Challenges in the Return of Genetic Results in Nephrology (U01 DK100876-07 Supp); the psychosocial impact of genomic data on adolescents and family relations (studies funded by the Children Cardiomyopathy Foundation and Columbia University’s Precision Medicine and Society); and Disability Inclusion in Precision Medicine Research (P50 HG007257-05S1). She recently completed a K01 Award that explored the uses of psychiatric genetics evidence in civil litigation and non-clinical settings, such as child custody disputes and schools (K01 HG008653).
Dr. Sabatello has been a Gray Matters Fellow, a Research Fellow in Medical Ethics at Harvard Medical School, and a Visiting Research Fellow at Columbia University’s School of Law. She serves as a member at various genomic- and ethics-related committees at Columbia University and elsewhere, including the Tri-Institutional Embryonic Stem Cell Research Oversight Committee (Tri-SCI ESCRO), the NHGRI’s Community Engagement in Genomics Working Group (CEGWG) and the Institutional Review Board (IRB) of the All of Us Research Program. She currently Co-Chairs the Ethics Committee of the International Society of Psychiatric Genetics.
Alexis Walker, PhD
- Assistant Professor
Alexis Walker, PhD is an interdisciplinary scholar trained in Science and Technology Studies (STS), political anthropology, organizational studies, and bioethics. Her research investigates the social dynamics of financial and private sector organizations in health and medicine. She is currently Principal Investigator on a four-year project (2019-2023) examining perspectives from members of the commercial genomics industry on the social and ethical dynamics of their field. This work is funded by an Early Career Investigator award (K99/R00) from the National Human Genome Research Institute.
Dr. Walker’s previous research has examined the organizational dynamics of international financial institutions making loans for global health projects, the ethics of “precision rationing,” and the politics of patenting biotechnology. Her work employs qualitative methods, including ethnography, in-depth interviews, and document analysis. Her most recent work includes additional survey methods and town hall-style focus groups.
Prior to coming to Columbia, Dr. Walker was a postdoctoral fellow at the Berman Institute of Bioethics at Johns Hopkins University. Dr. Walker received her doctorate from Cornell University’s Department of Science and Technology Studies, a master’s degree in political sociology and STS from University of Strasbourg (France), and an undergraduate degree in Biology from Brown University.
Research Associates
Caitlin McMahon, PhD, MPH
- Project Director
Caitlin E. McMahon, PhD, MPH received her doctorate in Sociomedical Sciences at the Mailman School of Public Health of Columbia University. She started her research career working in the Department of Psychiatry at NYU based in historic Bellevue Hospital. Her dissertation research has focused on the historical evolution of the health consumer identity and the ways in which consumer rhetoric, and social, economic, and racial inequalities have informed debates over health insurance in the U.S. throughout the 20th century. More broadly, her research interests extend to the history of activism in health social movements, rights language and justice in health care access, and public health policy.
Mika Caruncho, MSW, MPH
- Research Associate
Mika Caruncho, MSW, MPH, is a research associate trained in anthropology, public health policy, and social work. She has extensive experience in qualitative research and has spent the past few years supporting ELSI (Ethical, Legal, and Social Issues) studies in cancer genomics at the University of California, San Francisco Department of Humanities and Social Sciences. Her academic and professional interests include understanding the lived experiences of various stakeholders to examine health disparities and social policies, and the intersections between racial equity and healthcare access. She has been leading her own NCI funded diversity supplement to support her work on an ELSI project that follows an online, pragmatic RCT testing a risk-stratified approach to breast cancer using genomics. Through this study she hopes to further understand the experiences of breast cancer screening trial participants from underrepresented communities, so to inform medical systems on how to cultivate trust, reduce stigma, and increase participation and representation of diverse populations in medical studies.
Administration
Shawna Benston, JD, MBE, MA
- Director of Programs
Shawna Benston has a multidisciplinary background in bioethics, law, and the humanities, and experience in program development and management. Prior to joining the Division of Ethics, Ms. Benston served Columbia as Associate Director for Research Compliance Education in the Office of Research Compliance & Training, where she created speaker series, events, and trainings at the intersection of research ethics and research compliance. Ms. Benston has been a Postdoctoral Fellow at Columbia University's Center for Excellence in ELSI Research, where she focused on the ethical and policy implications of gene-editing technologies. She has a J.D. from the Benjamin N. Cardozo School of Law, a Masters of Bioethics from the University of Pennsylvania, a Masters in Classics from the University of St Andrews, and a B.A. from Yale University. Her scholarship has utilized case law and bioethical reasoning to explore dilemmas of patient agency at the beginning and end of life. She has taught courses on narrative medicine, bioethics mediation, and end-of-life ethics at the Yale Interdisciplinary Center for Bioethics Summer Institute.
Rachel Yarmolinsky, MS
- Sr, Program Director
Rachel Yarmolinsky, a longtime Director of Media Relations and Marketing at Columbia University Department of Psychiatry and a Regulatory Specialist at the Columbia University Human Research Protection Office, completed an MS in Bioethics at Columbia University in 2014. Her interests include the challenges of providing healthcare in an unjust society, research on ethical questions in medicine, and how to encourage ethical behavior. Ms. Yarmolinsky is experienced in event and meeting planning, science writing, graphic design, and media relations. She is on the steering committee of the Columbia University Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral Genetics, a member of the Pediatrics and Adult Medical Ethics Committees at NewYork-Presbyterian Hospital/CUIMC, a member of the Human Services Committee of New York City’s Community Board 2, and a member of the board of Science Writers in New York.
Dounya Alami-Nassif, MA
- Program Administrator
Dounya Alami-Nassif (she/her) joined the Ethics team after experience in nonprofit communications and development, academic event planning and promotion, as well as local government administration. She holds an MA in Near Eastern Studies from NYU and a dual BA in Government and International Relations/Global Studies from the University of Texas at Austin. She hopes to pursue more closely the intersections between area/diaspora studies and medical humanities.
Tiana Sepahpour, MBE
- Program Administrator
Tiana Sepahpour is a bioethicist by training who joined the Division of Ethics team after working in psychiatric research for several years, focusing on early intervention in psychosis. She holds a BA in Philosophy and Environmental Studies from Fordham University, and an MBE (Master of Bioethics) from the Johns Hopkins University Bloomberg School of Public Health. Tiana is interested in medical ethics, particularly in equity considerations for youth in the psychiatric space.
Dejda Collins, MA
- Program Manager (CTSA)
Dejda Collins is experienced in medical ethics and health inequity, with a research focus on medical maleficence and testimonial injustice towards minority women, resulting in legitimized feelings of disenfranchisement. She completed her MA in Medical Ethics & Law from Keele University and received an MA in Bioethics at New York University. Prior to joining the Department, she worked in oncology research coordination and served actively on a children's hospital's medical ethics committee. Dejda's interests lie in vulnerable populations' access to care and the importance of upholding patient agency and autonomy.
Dejda manages both the RKSER and TEAMS initiatives in the CTSA.
David Lamb, MS, MA
- Communications Associate
David Lamb is a digital marketing and communications professional with experience in academic and publishing settings. David holds a BSc in Molecular Biology from Royal Holloway, University of London, an MSc in Psychoanalytic Theory from University College London, and is nearing completion of an MA in Experimental Humanities at New York University. David is interested in how academic knowledge is disseminated and interacts with the culture at large.
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