ISTOCK, SJLOCKE
Genomics research increasingly depends on access to large pools of individuals’ genetic and health data, but there is mounting dissatisfaction with governance approaches that erect barriers between donors and the biomedical research in which they are participating. Typically, participants have little or no opportunity to track how their data are being used, what discoveries result, and what the new knowledge might mean for them, even when findings are of life and death significance for the participant.
Some frustrated communities have built their own scientific enterprises outside of traditional research settings. Disease advocacy organizations have established biobanks, for example, and firms like 23andMe and PatientsLikeMe have used crowdsourcing methods to build up repositories of genomic and health data, each attracting over 100,000 participants in just a ...
