"On Thursday the White House held a summit to discuss progress on its Precision Medicine Initiative, first announced last year. The program has consistently emphasized that privacy and security are among its priorities when it comes to research data, but on Thursday President Barack Obama waded deeper into a debate about rights and ownership when subjects contribute their genetic information to studies. But amid hopeful suggestions about how this data could improve medicine in the future, Obama pointed to an inherent tension in collecting the data. "It requires, first of all, us understanding who owns the data," Obama said. "And I would like to think that if somebody does a test on me or my genes, that that's mine. But that's not always how we define these issues, right? So there’s some legal issues involved.""
Ethically-tangled aspects of 21st century societies and cultures. In the vein of Charles Darwin’s 1859 “entangled bank” metaphor—a complex and evolving digital ecosystem of difference and dependence, where humans, technologies, ethics, law, policy, data, and information converge and diverge. Kip Currier, PhD, JD
Sunday, February 28, 2016
Obama Says People Who Give Genetic Samples for Research Should Own the Data; Slate.com, 2/26/16
Lily Hay Newman, Slate.com; Obama Says People Who Give Genetic Samples for Research Should Own the Data:
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