Protecting Participants in Genomic Research: Understanding the "Web of Protections" Afforded by Federal and State Law.

Leslie E Wolf Catherine M Hammack Erin Fuse Brown Kathleen M Brelsford Laura M Beskow

J Law Med Ethics

Leslie E. Wolf, J.D., M.P.H., is a Distinguished University Professor and Professor of Law at Georgia State University College of Law in Atlanta, Georgia and Director of the GSU Center for Law, Health & Society. Catherine M. Hammack, J.D., M.A., is an Associate in Health Policy and a member of the core faculty of the Center for Biomedical Ethics and Society at Vanderbilt University Medical Center in Nashville, Tennessee. Erin Fuse Brown, J.D., M.P.H., is an Associate Professor of Law at the Georgia State University College of Law in Atlanta, Georgia. Kathleen M. Brelsford, M.A., Ph.D., M.P.H., is a Research Assistant Professor in the Department of Health Policy and a member of the core faculty of the Center for Biomedical Ethics and Society at Vanderbilt University Medical Center in Nashville, Tennessee. Laura M. Beskow, M.P.H., Ph.D. is a Professor of Health Policy and the Anne Geddes Stahlman Chair in Medical Ethics in the Center for Biomedical Ethics & Society at the Vanderbilt University Medical Center in Nashville, Tennessee.

Published: March 2020

Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the "web" of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats.

Download full-text PDF	Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7307001	PMC
http://dx.doi.org/10.1177/1073110520917000	DOI Listing

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