Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine.
J Law Med Ethics. 2019 Mar;47(1):21-30. doi: 10.1177/1073110519840481.
Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
技术和生物医学信息学的进步扩大了生成和共享生物医学数据的能力。本文以基因组数据为视角，构建了一个生物医学研究中数据共享现状的分类法，以增进对关键利益相关者和现有数据共享实践的理解。该分类法突出了数据共享工作和促进者的多样性，并揭示了新的数据共享工作如何挑战现有关于数据所描述的个人角色的规范。
