DNA TESTING COMPANIES JUMP INTO PRIVACY DEBATE
Genetic testing companies are forming a new coalition on best practices for handling DNA information and to promote the industry in Washington as lawmakers put more scrutiny on their privacy practices.
Three companies — Ancestry, 23andMe and Helix, which provide DNA testing and analysis — formed the Coalition for Genetic Data Protection, first reported by The Hill.
“Given the high focus that data privacy has currently in Congress, it was important for companies who are doing right by their customers on data privacy make their voice heard,” said Steve Haro, a principal at Mehlman Castagnetti Rosen & Thomas, who is serving as executive director of the coalition.
Haro said the coalition would allow the industry to “let Congress know what the best practices are for protecting customers’ data and also to show their customers that they’re deserving of their trust.”
The move comes as genetic data companies are becoming increasingly popular in the U.S., with consumers turning to the tests to learn more about their family history. But the companies are also under the microscope on what they do with the vast amounts of DNA data they collect.
As of January, more than 26 million consumers have added their DNA to the four leading commercial ancestry and health databases, believed to be Ancestry, 23andMe, MyHeritage and Family Tree DNA, according to MIT Technology Review.