Guard the Data or Set it Free?

With the concept of genomic privacy becoming more illusory, researchers discuss whether tighter or fewer controls are needed.

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Yes! The answer certainly

Yes! The answer certainly lies in making this participant centric. And then, the preferences for data sharing, privacy and access are 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 health 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.

We have created a system in which these choices can be made, with the help or relevant guides, and can be changed as needed on a contextual basis. It is called the Platform for Engaging Everyone in Research. It can be seen in three different manifestations: trialsfinder.org, reg4all.org and free-the-data.org It is time to put participants at the center and drastically change the forces that shape clinical trials and the resulting data!