DNA Anonymity, Part I: Current state and concern

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The past few days have seen a flurry of controversial conversation following news reports that an online search engine was used to identify anonymous DNA donors. The news reports followed the January 17 release of a paper titled,“Identifying Personal Genomes by Surname Inference,” published in Science magazine.

The revelation that anonymous DNA donors could be re-identified sparked commentary about the privacy issues inherent to the collection of DNA databases. Within the past year, proponents of personalized healthcare have seen great achievements in genomics, with genetic sequencing kits on trajectory to become available over the counter, and with several companies already offering genetic sequencing services to the public commercially.

And with the rise of informatics' ability to interpret scientific data with increasing efficacy, researchers have naturally become excited about the potential advantages of creating genetic databases comprised of DNA sequences from vast numbers of people – because with high volumes of diverse genetic information readily available for analysis, personalized and effective disease treatment and prevention solutions become achievable.

This revelation about the non-guaranteed anonymity is not novel. Individuals who donate genetic information are informed that their anonymity is not 100% guaranteed, and the findings published in the recent Science article aren’t the first time an online search process was used to identify an anonymous donor. 

For example, in 2005, a news story swept the internet that a 15-year-old boy had correctly identified and then contacted his biological father, an anonymous sperm donor. The teenager used an online genealogical DNA service and an online birth date and birth name registry to pinpoint his father’s identity.

But if the regulation of large, widespread DNA databases becomes routine in the future of medical progress, would we ever find ourselves in a world akin to the fictitious, futuristic society of the 1997 sci-fi movie Gattaca?

The answer: highly unlikely.

Why? Stay tuned for a second blog post, "DNA Anonymity, Part II: What privacy can we expect in the future?", that will discuss what Americans can expect in terms of federal regulation concerning personal privacy and anonymity as genetic sequencing will likely become a routine part of future disease prevention and treatment.