Occupy Science? | The Scientist

“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 few years. Often labeled “citizen science,” these projects offer a two-way connection between participants and research—participants contribute their data, while seeing how it is used in research, what findings it generates, and how that new knowledge might impact their own lives... Such citizen science efforts have also begun to achieve something that is crucial to the future of personalized, or “precision,” medicine.  A cornerstone of such medicine, according to a 2011 National Research Council (NRC) report, is a dense “knowledge network” (i.e., biobank), built by “mining” genomic, phenotypic, health, behavioral, and environmental data from many people... Yet, few will submit to being “mined” in this way.  The NRC report notes that to realize such a vision, there must be a “gradual elimination of institutional, cultural, and regulatory barriers to widespread sharing of the molecular profiles and health histories of individuals.” But this emphasis on overcoming barriers neglects that such a knowledge network is necessarily also a social network, a network that connects people, whether they are the people who experience disease or the people who study it..”