Privacy control and public access to genomic data is the focus of a new article published in Scientific American this week, which discusses the benefits of big data repositories and raises concerns for participant privacy.
The answer certainly lies in making the systems more participant centric. The preferences for data sharing, privacy, and access can be set by the participant. There is no black and white; there is no one size fits all. We cannot expect that people from different communities, with different experiences of exploitation, discrimination and stigma, will want the same degree of sharing and privacy. We cannot expect that healthy individuals and those with life threatening diseases will make the same choices. Certainly we should free the data to make it most useful, but we should do that according to the granular and dynamic wishes of each participant.
Genetic Alliance and its partners have created a system in which participants can make their own choices, with the help of relevant guides, and can change preferences as needed on a contextual basis. It is called the Platform for Engaging Everyone in Research (PEER Network). It can be seen in three different manifestations: TrialsFinder, Reg4All and Free the Data. It is time to put participants at the center and drastically change the forces that shape clinical trials and the resulting data.