ruraldreams + citizen-science   1

Opinion: 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.
occupy  citizen-science  mcmsocnet  medical-research  open-science  open-data  registry  biobank 
january 2012 by ruraldreams

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