Securing Your DNA From Prying Corporate Eyes

I’ve always had a fascination with DNA, simply because it tells the hidden story of our species that should put to rest many of the controversial debates on the issue.

I have already spent a small fortune investigating my Y-chromosome and mitochondral DNA. Given our very mixed ancestry, I was curious to see what I came up with.

Apparently I’m haplogroup R1a1a from my father’s side, not that exciting because it’s the largest group in the world. But I can also cross-reference my markers with samples of human populations around the world, and I seem to have an remarkable affinity with Eastern Europe. Specifically, the Russian province of Oryol seems to have a very strong match to my paternal DNA. More than other populations around the world by a significant margin, and even considerably more than neighboring Russian populations.

From my mother’s side I’m haplogroup H13a1a2, one of the more diverse subclades of this group that is the most common one in Europe. This particular subset is found disproportionately higher in Daghestan. The closest population matching my mitochondrial genetic markers though are the Berbers around the Asni oasis in Morrocco.

Despite my more recent African origins, there is no escaping I have a large ancestral affinity with Europe, even if separated by thousands of years.

But there are people using DNA analysis for less frivolous reasons, usually to discover hidden alleles for debilitating diseases. What they don’t realize is that this information is probably not protected or considered confidential (which is probably why I’ve disclosed mine as above).

An article in Salon today by Peter Dizikes details how DNA analysis is being used commercially, and how confidentiality issues can arise.

For example, the DNA sequence of James Watson, who helped discover DNA, was found to possess a sequence for Alzheimer’s. Watson had try to hide this fact, removing the information from the online publication, but a third-party analyzed surrounding information and was able to find this and make it public. They were more interested in demonstrating how DNA information could be misused, stating,

…hiding genetic information in an otherwise fully disclosed genome sequence is not straightforward because of the availability of genomic data in the public domain that can be used to predict the missing data. We believe the potential for such indirect estimation of genetic risk has considerable relevance to concerns about privacy, confidentiality, discriminatory and defamatory use of genetic data, and the complexities of informed consent for both research participants and their close genetic relatives in the era of personalized genomics.

Although the Genetic Information Nondiscrimination Act will take force this May in the U.S. to prevent employment-based discrimination, people may still be denied long-term benefits. Companies may also sell your information to other third-parties who would misuse it.

Blaine Bettinger, a third-year law student at Syracuse University College of Law with a Ph.D. in Biochemistry, blogs at the Genetic Geneologist. He claims private companies have independent financial motivations to maintain privacy,

They have every incentive to keep information private. A security breach would be devastating for those companies.

But Dizikes claims that pharmaceutical companies are keen to get their hands on this info for research purposes, and may still be able to do so despite any contractual provisions.

Stanford law professor Henry Greely remains skeptical about privacy controls, but also claims that the importance of genetics is often misunderstood and overstated,

People believe in the magic of genes, and buy into the idea that they are the deepest secrets of our being. Whereas maybe my credit card records come closer to being a deep secret of my being.

People may still participate in DNA analysis regardless, for their own curiousity, and the greater good.

Without those scientific participants in Oryol or Asni, I may never have known of my long-lost distant cousins.