Anonymous DNA Donors Revealed
Those "anonymous" studies may not be so anonymous. A paper published this Thursday in the journal Science revealed that the identities of nearly 50 DNA donors were able to be confirmed. The donors were told that no identifying information would be included in the studies, but were warned by researchers that their identities might become known in the future.
Lead by the Whitehead Institute of Biomedical Research in Massachusetts, researchers examined the genetic information of donors who had participated in the 1000 Genomes Project, an international collaboration to create a catalog of data from 1000 people of different ethnic groups. They created a computer algorithm that could identify unique genetic markers on the Y chromosome of the men involved in the project. Then they searched genealogy databases that contained both the Y chromosome information and the men's surnames.
The results aren't a secret. The researchers were able to find family trees, obituaries, and other telling pieces of information to track down the real identities of donors. In the end, the researchers were able to identify 50 men and women who had been involved in genetic studies.
As worries about DNA privacy mount, this study shows that by finding even one distant relative, an identity can be revealed. Since DNA can show a person's susceptibility to certain diseases and other ailments, the current concern is that the information might be used in the future by insurers or employers to discriminate against that person.
Yet this problem isn't all that new. In 2008, a similar issue occurred when a geneticist was able to show that he could trace genetic data back to an individual that had participated in a study. The response was almost immediate; the National Institutes of Health and the Wellcome Trust tightened access to collections of DNA, thus helping to safeguard identities.
Currently, measures are being taken to secure the privacy of those who volunteer anonymously for genetic studies.