23andMe data partnership with GlaxoSmithKline raises privacy concerns

26 Jul 2018

23andMe home testing kit. Image: Victor Moussa/Shutterstock

Home DNA test results from millions of 23andMe customers will be used by GSK to design new medicines, and there are some privacy concerns.

The popularity of at-home DNA tests has leapt in recent years, as more and more people want to examine their heritage and family past.

While widely used, some privacy experts have concerns about the potential misuse of such personal data held by the testing companies. One such decision made by 23andMe and GlaxoSmithKline (GSK) is already the source of some controversy.

23andMe teams up with GSK

23andMe and GSK aim to leverage the increasingly popular home genetic testing market to create and develop new medicines. 23andMe patrons will now be asked if they wish to participate in scientific research, moving the consent needle from personal DNA testing towards drug discovery.

CEO of 23andMe, Anne Wojcicki, wrote: “As always, if our customers do not want to participate in research, they can choose to opt out at any time.” GSK has invested $300m in 23andMe and the two firms have sealed a four-year deal, providing the drugs company with exclusive rights to collaborate.

The first project is going to examine new drugs for the treatment of Parkinson’s disease.

President of R&D at GSK, Dr Hal Barron, said: “We are excited about this unique collaboration as we know that drug targets with genetic validation have a significantly higher chance of ultimately demonstrating benefit for patients and becoming medicines.”

While the discovery of new medicine is a benefit to society, there are some questions being raised around the deal.

Peter Pitts, president of the Center for Medicine in the Public Interest, told NBCNews that consumers whose DNA is used in the research should be financially compensated. “Are they going to offer rebates to people who opt in so their customers aren’t paying for the privilege of 23andMe working with a for-profit company in a for-profit research project?”

He noted that while public health institutes asking people to donate their data for the public good is one thing, moving paying customer data from one for-profit company to another is “upside down”.

Some privacy advocates have noticed that under Article 9 of GDPR, health-related and genetic data are special categories with quite strict regulations around them. This could be a concern for EU-based individuals who sign up to the service, but it needs more examination.

The 23andMe Biobanking Consent Document reads: “By choosing to have 23andMe store either your saliva sample or DNA extracted from your saliva, you are consenting to having 23andMe and its contractors access and analyse your stored sample, using the same or more advanced technologies.”

You can request that the company discard your DNA by going to the Accounts and Registration portion of its website and selecting the last bullet point, ‘requesting account closure’.

Firms say privacy is highest priority

Both companies stated that security was a high priority for the partnership. “Participating in 23andMe’s research is always voluntary and requires customers to affirmatively consent to participate. For those who do consent, their information will be de-identified, so no individual will be identifiable to GSK.

“The continued protection of customers’ data and privacy is the highest priority for both GSK and 23andMe. Both companies have stringent security protections in place when it comes to collecting, storing and transferring information about research participants.”

23andMe home testing kit. Image: Victor Moussa/Shutterstock

Ellen Tannam was a journalist with Silicon Republic, covering all manner of business and tech subjects