Law Commons^™

Enabling Responsible Public Genomics, John M. Conley, Daniel B. Vorhaus, Adam K. Doerr

John M Conley

As scientific understandings of genetics advance, researchers require increasingly rich datasets that combine genomic data from large numbers of individuals with medical and other personal information. Linking individuals’ genetic data and personal information precludes anonymity and produces medically significant information—a result not contemplated by the established legal and ethical conventions governing human genomic research. To pursue the next generation of human genomic research and commerce in a responsible fashion, scientists, lawyers, and regulators must address substantial new issues, including researchers’ duties with respect to clinically significant data, the boundary between genomic research and commerce and the practice of medicine, and …