Property, Privacy, and Biobanks

Radhika Rao

Research using human biological specimens is booming, yet many questions regarding such research remain unanswered.  Is consent necessary for the use of human biological specimens in research, and if so, what counts as informed consent?  Is it sufficient to give donors an opportunity to opt out, or must they be provided with information about the purposes of the research and affirmatively consent?  What about property rights – does the donor “own” his or her biological specimen and have a right to control its use?  Moreover, if such research leads to patents and commercialization, do the donors have a right to share in any resulting profits?  And if property discourse is not appropriate in this context, then what alternate framework should apply?  In my presentation, I attempted to map the existing legal landscape and explore these pressing questions through the lens of recent controversies involving newborn blood spots and the Havasupai Tribe.