Ancestry, 23andMe, and other genetic testing companies have agreed that they will be upfront with customers when they share their DNA with companies, researchers, or authorities.
Under the new guidelines accepted by the companies, they have agreed to get “separate express consent” before providing genetic information to third parties. They also promise to 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,” amongst other things.
Privacy issues, as well as who owns the data collected from genetic testing services, has become a larger issue in recent years.
In 2017, the Federal Trade Commission issued a statement on the services, advising consumers to be cautious with the note, “Although most tests require just a swab of the cheek, that tiny sample can disclose the biological building blocks of what makes you you.”
The FTC warned that others might profit off of the data you provide to the testing companies.