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Breach of Security
This breach of confidence is not a matter of strict record keeping or a leak of information. Instead, the information is in the genetic material itself. Scientists have found that through information contained in the Y chromosome, matches can be made with a public database.
The anonymous genetic material can have identifiers pulled from it, which is then compared to the various public genealogy databases. These databases — if a match exists — contain the identifying information.
The match is not necessarily direct. The information pulled from the Y chromosome is general enough to be contained in a number of people. The matches are within the same family tree, however. This means the anonymous genetic material now has a surname attached.
The Next Step
This amount of connection alone isn’t enough to warrant concern. After all, what use is a surname in finding identifying information about a donor? It’s not as specific as DNA paternity testing, for example. More specifics come later.
Once the surname is identified, more research can take place. The anonymous genetic material isn’t completely devoid of information. The Health Insurance Portability and Accountability Act, or HIPAA, allows the donor’s age and state of residence to be attached.
With this information, the genetic material now has the age, state and surname of the donor attached to it. This generally means no more than a dozen results. From there, regular detective work through Internet searches and phone directories can narrow the results down to a specific person.
The problem is that all of this information is publicly available. Anyone can access the medical databases containing the anonymous genetic material. Anyone can research through genetic genealogy databases. Anyone can do the detective work necessary to locate the specific person.
Increasing security, however, is not the answer. The director of policy at the Human Genome Project, where much of this information can be found, says why. The information needs to be publicly available. Restricting it denies access to the people who legitimately try to advance our knowledge of biology and health.
The Human Genome Project embraces and emphasizes openness about the system. While the donation is anonymous in the sense that it has no name attached, it can still be used to identify the donor. The donation is not without that risk. However, there is a wide range of benefits to the donation. It advances the human understanding of biology and can help to develop treatments for genetic diseases, among other things.
Using the Human Genome Project’s database as a cheap paternity test is unlikely. The project works to maintain the privacy of their donors, but admit they can’t stop everything. This sort of breach in security simply means that the security measures need to adapt to the evolution of technology over time.
Image Credit: Nemo’s great uncle
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