Ancestry, 23andMe draft privacy rules for sharing DNA data with third parties

Direct-to-consumer genetic testing companies have agreed to a new set of guidelines that govern how they obtain customers' consent to share their DNA with other companies and researchers, according to Forbes.

The new guidelines, dubbed Privacy Best Practices for Consumer Genetic Testing Services, mean the companies must get "separate express consent" before sharing customers' information with third parties. They also provide "detailed transparency about how genetic data is collected, used, shared and retained including a high-level summary of key privacy protections posted publicly and made easily accessible to consumers," and "access, correction and deletion rights," Forbes reports.

Last year, the Federal Trade Commission warned consumers to exercise caution before purchasing an at-home genetic test kit. According to the FTC, "although most tests require just a swab of the cheek, that tiny sample can disclose the biological building blocks of what makes you you," and other organizations might be able to profit off the data these companies collect.

The release of the guidelines comes about one week after 23andMe entered into a four-year collaboration with drugmaker GlaxoSmithKline to use human genetics research to guide drug development, sparking concerns that customers may not fully understand their privacy rights.

More articles on data analytics & precision medicine:

5 things to know about the Federal Data Strategy project
Google establishes AI, analytics program for nonprofits
Half of 'All of Us' participants are underrepresented minorities, NIH chief says

© Copyright ASC COMMUNICATIONS 2020. Interested in LINKING to or REPRINTING this content? View our policies by clicking here.


Featured Webinars

Featured Whitepapers