Watched Not Just by the NSA: Your de-identified DNA information can actually be identified

By Qi Cheng, Ph.D.

When a clinical research subject is asked to give permission to use his or her sample for research purposes, the subject is often told that the sample will be de-identified without a trace; therefore, privacy would be assured. This privacy insurance, however, was shaken by recent findings. As reported by the New York Times (NYT), a few researchers have succeeded in identifying individual subjects simply using their DNA or RNA data stored in research databases since 2008. The genetic information can not only identify a person, but also reveal a great deal about this person. With current techniques, even a piece of your genetic sample may be enough to hurt your, or even your children’s, privacy. Experts have realized such holes in the privacy security for study subjects and have been working to solve this problem. More restricted regulation over the use of these databases would be expected. However, an exclusive solution is not likely.  Research subjects in the future, therefore, will face a greater risk of the loss of their privacy.

Another report of the same issue of the NYT highlighted the issue of genetic data safety as well: the collection of DNA samples by local police departments. The Supreme Court’s recent decision allows the police authority to collect DNA from arrested criminals. The procedure is operated by local authorities under their own rules and lacks regulatory oversight. In some cases, the police collected DNA of not just the suspects, but also the victims and their relatives, with or without their awareness.

These two reports might be put into the same paper just by chance, but together they give reason to be concerned about the intrusion of our privacy by authorities, as well as unauthorized persons. This is especially relevant after the NSA surveillance program was recently exposed to the public. With the current technologies, our personal lives become more and more transparent: our emails, phone numbers,  website visits, and now our genetic information. It might be a price we have to pay living in the modern age. However, we should take steps to restrict the intrusion of our privacy and prevent the possible abuse of personal data.

Qi (Chee) Cheng, Ph.D., is a freelance medical writer/editor in New Jersey.  Qi guest blogs for Cancer InCytes Magazine.

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