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Donating DNA isn't as anonymous as you might think

DNA strand

DNA donors have traditionally had their identities safeguarded under a cloak of anonymity, but a new study suggests that this information isn't as secure as some may think. In a paper published this week, researchers from the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts found they were able to pinpoint the identities of nearly 50 individuals who had donated genetic information to scientific research. Finding this data wasn't even that hard, requiring only a computer, an internet connection, and publicly available information.

“This is an important result that points out the potential for breaches of privacy in genomics studies," said Whitehead Fellow Yaniv Erlich, who led the research. Erlich and his team began by analyzing unique information embedded in the Y chromosomes of men who participated in the 1000 Genomes Project — a public catalog of genetic data from a wide range of ethnic groups. The men had donated their genomes under conditions of anonymity, but Whitehead's researchers were able to retrieve their identities by matching their Y chromosome identifiers against publicly available information on family tree websites, obituaries, and demographic databases.

"It only takes one male."

Once they matched a Y chromosome to a surname, they were able to retrieve information on a man's entire family through extensive web searches and queries to the Coriell Institute for Medical Research, a New Jersey-based nonprofit that holds genetic material, "It only takes one male,'' Erlich told the Wall Street Journal. "With one male, we can find even distant relatives.''

Erlich added that this technique is most effective for those who participate in genealogy services and websites — typically, middle and upper class white Americans. Such websites are usually used to piece together an individual's family tree, and sometimes couple surnames with Y chromosome data, since this information is passed on from father to son, and can therefore be used to create a generational timeline. Erlich estimates that his method could be used to identify the last names of 12 percent of all US white males participating in similar DNA studies.

Scientific organizations have already taken steps to safeguard the identities of DNA donors, though Whitehead's study has raised new questions about whether researchers can ever promise true anonymity in an age where database queries are just a click away. Participants in the 1000 Genomes Project, for instance, were told that the institution would do everything it could to protect their privacy, but that technology may one day make it possible to reveal their full names.

David Altshuler, co-chair of the project's steering committee, said that when it comes to anonymity, study participants should be given a range of options. "If they choose to share that's a very admirable thing because by sharing freely, progress for everyone is accelerated," Altshuler told the Journal. "And if someone is not comfortable we should respect that too and find ways for them to still participate in research."

The Verge
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