DNA Profiling Companies Seek to Allay Public Anxiety over Data Sharing Practices

A number of DNA-testing firms have signed a set of voluntary guidelines pledging to protect customer privacy. The companies, which included 23andMe, Helix, MyHeritage, and Habit, have promised not to share data with third parties without first seeking express consent from their users; they also vowed to publish annual transparency reports that detail any data sharing with law enforcement agencies.

The pledge, however, will not affect anonymized data-sharing for medical research.

The announcement comes in response to growing public concerns about the practices of such companies. It all started back in April when authorities were able to apprehend a man for suspicion of being the Golden State Killer using a public dataset of genetic information belonging to an ancestry site called GEDmatch. The police had referred to the company’s privacy policy to justify the fact that it had searched the database without a court order.

Some companies already disclose their dealings with law enforcement agencies, including ones that signed on the new guidelines. For reference, 23andMe said that it had received five requests last year but did not fulfill any. But going forward, those companies will try to notify users if their data is requested. It must be noted that companies can be forced to keep quiet regarding a request with a court gag order.

What Could Go Wrong?

DNA testing is becoming big business. MIT Technology Review recently proclaimed that “2017 was the year consumer DNA testing blew up” as the number of people who have had their DNA analyzed with “direct-to-consumer genetic genealogy tests” currently exceeding 12 million, according to industry estimates.

In addition to pharmaceuticals and medical research centers, certain businesses find this type of information to be particularly useful. But while they stand to benefit from it, it exposes individuals to what is known as genetic discrimination. Looking at an individual who carries a high risk of Parkinson’s disease, loan companies might decide to deny them a mortgage, insurance companies might increase their premiums, managers could decide not to hire a person they believe could incur heavy medical bills in the future.

And to make matters worse, most of these tests are known to be often wrong or wildly inaccurate.