Information disclosure makes the case for information altruists

This just-published article in PLoS Genetics by David Craig and Nils Homer reveals how the straightforward use of information technology puts the identify and health risks of individuals within the access of the public if two conditions are fulfilled: 1) Their genome-wide data (e.g. from a SNP chip) was published online and 2) Someone has some DNA from that individual (e.g. life insurance company? Forensic experts?). This is essentially the genomic equivalent of the disclosure mechanisms that Latanya Sweeney highlighted in the case of conventional medical data. As a result of this article, several national research organizations, private and public, are now pulling data down from their websites. This is going to therefore result in at least a temporary setback in genomic data dissemination for research purposes. Which is going to sadden all of us who are working to bring biomedicine forward into the 21st century. In this context, it seems that we will really have to find large cohorts of health information altruists who are willing to share their data with full understanding of the risks, and perhaps full legislative protection against such risks.

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