EFF Resources - Biogenome Science at an International Scale: Navigating ELSI Challenges
Session title: Biogenome Science at an International Scale: Navigating ELSI Challenges
Date and time: Friday, April 11, 2025 | 12pm ET US / 9am PT US
Moderator: Patrick Keolu Fox, PhD
Presenters: Melissa Goldstein, JD & Sally M. Katee
CERA Coordinator: Josephine Johnston, LLB, MBHL
Staff: Ashlin Amano, David Lamb, Faryn Fairweather, Grace Morris
Biographies
MODERATOR: Patrick Keolu Fox, PhD, Kānaka Maoli (Native Hawaiian) is an assistant professor at University of California, San Diego, affiliated with the Department of Anthropology, the Global Health Program, the Halıcıoğlu Data Science Institute, the Climate Action Lab, and the Indigenous Futures Lab. He holds a Ph.D. in Genome Sciences from the University of Washington, Seattle (2016). Dr. Fox’s multi-disciplinary research interests include genome sequencing, genome engineering, computational biology, evolutionary genetics, paleogenetics, and Indigenizing biomedical research. His primary research focuses on questions of functionalizing genomics, testing theories of natural selection by editing genes and determining the functions of mutations.
Dr. Fox has published numerous articles on human genetics, biomedicine, ancient genomics, and Indigenous data sovereignty, most recently in the New England Journal of Medicine, Nature, and the Proceedings of the Royal Society B.
Dr. Fox is a recipient of grants from numerous organizations including the National Institutes of Health, the National Science Foundation, National Geographic, the American Association for Physical Anthropology, Emerson Collective, the Social Science Research Council and the Massachusetts Institute of Technology, SOLVE Initiative.
Link to Keolu’s biography: https://css.ucsd.edu/people/profiles/pkfox.html
PANELIST: Melissa Goldstein, JD is a Professor in the Department of Health Policy and Management at the Milken Institute School of Public Health at the George Washington University, where she teaches courses in bioethics (including genomics, reproductive ethics, end-of-life, and research ethics issues), health information technology policy, and public health law and conducts research on health information privacy and the legal and policy aspects of health information technology. Professor Goldstein is a former director of the Markle Foundation's health program, where she managed the policy subcommittee of Connecting for Health and other policy aspects of the foundation’s work in health information technology. Ms. Goldstein has also worked as a legal consultant to President Clinton’s National Bioethics Advisory Commission, a senior litigation associate at Skadden, Arps, Slate, Meagher, and Flom, LLP, and a White House Fellow and domestic policy advisor to Vice President Al Gore.
Professor Goldstein graduated Phi Beta Kappa from the University of Virginia, received her law degree from Yale Law School, and completed a post-doctoral fellowship in bioethics and health policy at Johns Hopkins and Georgetown Universities. She has served as a member of GW’s IRB and hospital ethics committee and speaks frequently on issues in bioethics, health policy, health information privacy, and health information technology. Ms. Goldstein’s recent research and writings have focused on privacy and security issues in health information exchange and the use of big data, as well as the effects of health information technology on the physician-patient relationship and patient engagement. During the 2010-2011 academic year, Professor Goldstein served as a senior advisor to the Chief Privacy Officer in the Office of the National Coordinator for Health Information Technology, U.S. Department of Health and Human Services. Most recently, Professor Goldstein served as the Assistant Director for Bioethics and Privacy in the White House Office of Science and Technology Policy during the final year of the Obama Administration.
Link to Melissa’s biography: https://publichealth.gwu.edu/departments/health-policy-and-management/melissa-goldstein
PANELIST: Sally M. Katee is currently the ABS Research Associate at the International Livestock Research Institute (ILRI). Sally is a lawyer by training and an experienced ABS-Nagoya Protocol Legal Specialist, skilled in Legal Assistance, Writing, Research and Advisories, ABS Compliance in Agricultural Genomic Research Industry & Capacity Building Initiatives. Sally also currently occupies the role of Chair of the Ethics, Legal & Social Issues (ELSI) Committee for the African BioGenome Project: A coordinated Pan-African effort to build capacity (and infrastructure) to generate, analyze and deploy Genomics Data for the improvement and sustainable use of biodiversity and agriculture across Africa. She is also a member of DSI Network, iDSI Group and the Executive Governance Committee of the Earth BioGenome Project. Sally is passionate about working collaboratively with diverse interest groups to facilitate policy, compliance, and action toward a sustainable future with improved agriculture, food security, poverty alleviation, and conservation of Genetic Resources while advocating for policies that are practical, research-enabling, and environmentally sound.
Link to Sally’s biography: https://www.ilri.org/people/sally-katee
CERA Resources
We invite you to browse ELSIhub Collections. ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees: https://elsihub.org/resources/collections
This session’s featured ELSIhub Collection: Ethical, Legal, and Social Implications of Generative AI (GenAI) in Healthcare curated by Kristin Kostick-Quenet, PhD, Assistant Professor, Center for Medical Ethics and Health Policy, Baylor College of Medicine.
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