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.
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 2019, 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.
Direct-to-consumer genetic testing is marketed directly to customers via television, print advertisements, or the Internet, and the tests can be bought online or in stores. Customers send the company a DNA sample and receive their results directly from a secure website or in a written report. Direct-to-consumer genetic testing provides people access to their genetic information without necessarily involving a healthcare provider or health insurance company in the process.
Dozens of companies currently offer direct-to-consumer genetic tests for a variety of purposes. The most popular tests use genetic variations to make predictions about health, provide information about common traits, and offer clues about a person’s ancestry.
The number of companies providing direct-to-consumer genetic testing is growing, along with the range of health conditions and traits covered by these tests. Because there is currently little regulation of direct-to-consumer genetic testing services, it is important to assess the quality of available services before pursuing any testing.