http://the-scientist.com/2012/01/24/...ccupy-science/

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.

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. The robustness of the knowledge network will depend on social connections...

Science and citizens should not occupy separate worlds: by strengthening the role of citizens in science, science too will be strengthened.