title: Voting with their mice: personal genome testing and the "participatory turn" in disease research.
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.
authors.affiliation: King's College London, Centre for Biomedicine and Society, England, UK. Barbara.prainsack@kcl.ac.uk
authors.forename: Barbara
authors.initials: B
authors.lastname: Prainsack
mesh_terms: D001294:Attitude to Health; D003936:Diagnosis, Computer-Assisted; D005260:Female; D005544:Forecasting; D020022:Genetic Predisposition to Disease / Q000517:prevention & control; D030661:Genetic Privacy / Q000941:ethics*; D005820:Genetic Testing / Q000941:ethics* / Q000379:methods; D015894:Genome, Human; D023281:Genomics / Q000941:ethics / Q000379:methods* / Q000639:trends; D033161:Government Regulation; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data*; D008297:Male; D008389:Marketing of Health Services / Q000941:ethics* / Q000639:trends; D018570:Risk Assessment; D006113:United Kingdom