Many people who take at-home DNA tests to learn more about their family tree don’t realize that their data could be shared for other purposes. Consumer DNA testing companies share users’ data with law enforcement, drug makers, and even app developers.
The implications of privacy around genetic information came into full view when police used a genealogy website to track down a suspect in the decades-old case of the Golden State Killer. In February, FamilyTreeDNA, an early pioneer of the rapidly growing market for consumer genetic testing, granted the FBI access to its database of nearly 2 million genetic profiles.
Margo Georgiadis, president and CEO of Ancestry, said her company does not cooperate with law enforcement unless compelled by a court order. In 2018, she says, the company had 10 requests from law enforcement. But those inquiries were related to credit card fraud, not genetics.
“There’s no question that in the industry as a whole, other actors have chosen to go down a different path and not meet the highest standards,” Georgiadis said Monday at Coins2Day’s Brainstorm Tech conference in Aspen, Colo. “Consumers need to understand they do have a choice, and that there are real differences between companies.”
Georgiadis said privacy is at the root of what makes her company trustworthy with the consumer. In June, Ancestry partnered with 23andMe and Helix to form the Coalition for Genetic Data Protection, an advocacy group to defend their efforts to safeguard customers’ information and promote the industry as lawmakers put more scrutiny on their privacy practices.
“We created a set of privacy standards that we all agreed to abide by,” she said. “We tried to set them at the highest bar so that consumers can have the confidence that the companies in their industry have stated what they stand for.”
Othman Laraki, the co-founder and CEO of genetics company Color, echoed her comments. He added that privacy is at the top of the agenda for every company that works in the space. “As a community, we’re internally negotiating how we’re going to govern that data,” he said. “This current cycle is very much driven by consumer choice.”
More than 26 million people have shared their DNA with one of the four leading ancestry and health databases. Georgiadis urged consumers to be careful which company they choose to do business with because not everyone has the same privacy standards.
“One of the challenges with every technology innovation is that it creates a whole new set of issues that we all need to think about,” Georgiadis said. “As leaders, we need to take responsibility for thinking and anticipating those issues and setting high standards for the way in which we do business.”
More must-read stories from Coins2Day Brainstorm Tech 2019:
—The real reason Walmart needs its stores in order to compete with Amazon
—Quantum computers might save the world—if there are workers to build them
—Analyst: Expect more tech regulation despite declining user privacy concerns
—Barbie movie will cast minority actors, according to Mattel CEO
—Slack CEO Stewart Butterfield isn’t worried about battling chief rival Microsoft
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