Ancestry, 23andMe and other popular companies that offer genetic testing pledged on Tuesday [July 31] to be upfront when they share users’ DNA data with researchers, hand it over to police or transfer it to other companies, a move aimed at addressing consumers’ mounting privacy concerns.
Under the new guidelines, the companies said they would obtain consumers’ “separate express consent” before turning over their individual genetic information to businesses and other third parties, including insurers. They also said they would disclose the number of law-enforcement requests they receive each year.
The new commitments come roughly three months after local investigators used a DNA-comparison service to track down a man police believed to be the Golden State Killer, who allegedly raped and killed dozens of women in California in the 1970s and 1980s. Investigators identified the suspect using a decades-old DNA sample obtained from the crime scene, which they uploaded to GEDmatch… .
Jules Polonetsky, the leader of the Future of Privacy Forum, a Washington D.C.-based nonprofit that helped companies draft the new privacy guidelines, said his organization’s work began months before the Golden State Killer incident. But he said hopes the blueprint can serve as a “first effort at showing the sector what the right way to handle some of these challenges is.”