Jaharis Podcast on Health & IP
Am I My Cousin's Keeper? A Proposal to Protect Relatives of Genetic Database Subjects
Proposing a new regulatory mechanism, “Data Protection Review Boards” (“DPRB”), to balance genetic innovation and Users' privacy. Based on the model of Institutional Review Boards (“IRB”), that oversee the protection of human subjects in research, DPRBs would review data-sharing arrangements between database companies and other private entities with an exclusive focus on privacy risks to data subjects and their identifiable relatives.