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

Authors: Prainsack B

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.

Keywords: Attitude to Health; Diagnosis, Computer-Assisted; Female; Forecasting; Genetic Predisposition to Disease/prevention & control; Genetic Privacy/*ethics; Genetic Testing/*ethics/methods; Genome, Human; Genomics/ethics/*methods/trends; Government Regulation; Great Britain; Humans; Internet/*utilization; Male; Marketing of Health Services/*ethics/trends; Risk Assessment
Journal: Accountability in research
Volume: 18
Issue: 3
Pages: 132-47
Date: May 17, 2011
PMID: 21574070
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Categories: Crowd Sourcing
Citation:

Prainsack B (2011) Voting with their mice: personal genome testing and the "participatory turn" in disease research. Accountability in research 18: 132-47.



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