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DNA From Anonymous Studies not so Anonymous After All

If you’ve participated in a scientific study recently in which you anonymously submitted your DNA, your privacy may be at risk. A new study in Science found that by matching Y-chromosomes from anonymous databases of genetic information and comparing it with similar information on public genealogy websites, researchers were able to positively identify 50 participants of supposedly anonymous studies. The WSJ reports:

Using a computer algorithm, the researchers focused on identifying unique genetic markers on the Y chromosome of men in the project. They searched publicly accessible genealogy databases that contain both Y chromosome information and men’s surnames.

Such genealogy sites, which people join in hopes of compiling their family tree, sometimes include Y chromosome data because it is passed from father to son and can be traced back generations. Some genealogy sites group such genetic information with surnames.

When they got a match to a surname, the researchers ran numerous Internet searches to collect data on each individual’s family tree, including obituaries, which often list the names of a deceased’s family members. They also searched for demographic data on the public website of the Coriell Institute for Medical Research, a nonprofit in Camden, N.J., that houses collections of genetic material.

With the family-tree data, they were able to identify nearly 50 men and women who participated in genetic studies. “It only takes one male,” said Yaniv Erlich, a Whitehead fellow, who led the research team. “With one male, we can find even distant relatives.”

The findings have touched off a debate over the delicate balance between scientific research, which requires the sharing of information between researchers and laboratories, and the privacy rights of individuals.

This is a debate that we need to have. One the one hand, there is a strong, even an overwhelming public interest in allowing scientists and researchers to acquire and work with information about DNA. This is one of the most promising avenues for research that can find new treatments and cures and help individuals take control of their health and assess their individual risks.

On the other hand, the right—and even the need—to keep such information confidential is  also strong.

This is one area where government has an important role to play. It’s up to the government to develop a legal framework that permits the legitimate use and promotes the collection of this data while also protecting the rights of the individuals involved.

The policy dilemmas of the future are already here.

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