alexa Voting with their mice: personal genome testing and the "participatory turn" in disease research.
Biomedical Sciences

Biomedical Sciences

Biology and Medicine

Author(s): Prainsack B

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Abstract While the availability of genome tests on the internet has given rise to heated debates about the likely impact on personal genome information on test-takers, on insurance, and on healthcare systems, in this article I argue that a more tangible effect of personal genomics is that it has started to change how participation in disease research is conceived and enacted. I examine three models of research participation that personal genomics customers are encouraged to engage in. I conclude with an evaluation of the pitfalls and benefits of "crowdsourcing" genetic disease research in the context of personal genomics. This article was published in Account Res and referenced in Biology and Medicine

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