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« Reaction to Supreme Court's Decision in AMP v. Myriad | Main | After Myriad: A Herd of Elephants in the Room »

July 02, 2013

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The Free the Data web site acknowledges that "It is impossible to achieve "perfect" security because new vulnerabilities and threats appear every day." This is important information patients to have before they turn their private genetic data over to strangers. I'm not convinced people know what they are "signing up for" when they participate in this unregulated public database.

ClinVar is a public database run by the National Institutes of Health. A single variant or mutation is deposited, without any identifiers or path back to the donor.

A single variant, or mutation, is not a security threat. It is also not a privacy threat because there is no way to associate the single variant, without the other variant (even then it is hard to do unless they are a unique combination, and then one still needs a second data source with identifiers available) with an individual.

That said, we, of course respect individual decisions, which is why our system gives one the tools to completely block all sharing of one's information.

Free the Data is an opportunity to create a resource for all to use, with no risk to individuals. The proprietary database has 13,000+ variants in it - many unknown to the clinicians who are trying to advise women as to whether they have an extremely high likelihood of breast and ovarian cancer or not. As more labs offer BRCA1/2 testing, it is important to have these variants available.

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