It’s Your Data … Shouldn’t You Have Access To It?

Posted Thu, 02/07/2009 - 16:36 by Robert Hastings

Interesting little piece from 23andme about individual data rights

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by Gudmundur A Thorisson - 8 Jul 2009 - 12:36

That's a good question, actually with several sub-questions within depending on the level of granularity (data collection vs individual 'slices' within) and one's perspective (participant, researcher, funding body, society). Have a look at this paper which discusses the complex interplay between thes various stakeholders in research:

Foster MW and Sharp RR. Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nat Rev Genet. 2007 8(8): 633-9 doi:10.1038/nrg2124

Here's an analogy from the social networking domain: Facebook's 200 million users control their individual personal data but the company owns the data. Similarly, the ResearcherID service operated by Thomson-Reuters lets people edit (i.e. control) their individual author profiles but the company owns the data collection as a whole.