An anonymous genealogy registry may not be as private as many had hoped, as Dan Vergano wrote on USA Today that a report has identified 12 percent of the men in this publicly available record of biological profiles. He said this raises concerns for the security and protection of this information in a time when more genetic data is publicly published.
With this registry, there were genomes and full profiles of many who volunteered to have their genes analyzed. This project was completed a decade ago and many other maps have come since this was created, but researchers were able to tie family names with some of these genes. This made information about genes that run in some families very public, according to Vergano.
“Everyone benefits from more genomic information finding its way into research, offering clues to rare diseases and other ailments,” said Yaniv Erlich of the Whitehead Institute for Biomedical Research, who also headed this report, which appeared in full in Science. “But we wanted to illuminate the issue of potential privacy issues,” he says, not to stop the flood of genomic information helping researchers, but to halt avenues for privacy abuse.”
The study looked at the men in the 1000 Genomes Project which was supposed to be anonymous, Vergano wrote on USA Today. The male genes were tied to the last names of men in ancestry-tracing websites available to the public. They used age, location and other information to identify nearly 50 men, even tying common last names to distinct genes in the records. University of Cambridge geneticist Martin Bobrow said this is a unique situation in one sense, but in another it is critical, as these are real people putting their DNA information into public databases and not having it secured as well as it could be from the public.
MIT’s website quoted Whitehead Institute Director David Page, who said this work is a crucial reminder that there is an increasingly likelihood of privacy breaches with the large amount of genetic information going online and being made publicly available. He believes it is critical that proper steps are taken for data protection to make sure this information is as secure as possible. Erlich said his goal was to shine a light on the status of identifiable genetic information in order to make sure participants and those doing these studies are aware of the need for better security and guidelines. Companies should take what they have seen from this study and be sure they apply it to their data banks via encryption and increased security over data that must stay private.
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