23andMe to give drugmakers non-exclusive access to consumer DNA data

In a recent development that may raise serious concerns among privacy advocates, drugmakers are set to gain non-exclusive access to 23andMe consumer genetic data in exchange for millions of dollars paid to the genetic company. The news comes just a few weeks after hackers leaked 4 million more 23andMe user records, including records of the “wealthiest people living in the US and Western Europe.”

According to a report by Bloomberg, UK-based pharmaceutical giant GSK will pay 23andMe “$20 million for non-exclusive access to genetic data” held by the consumer-focused genetic testing company. This agreement extends an existing five-year collaboration, enabling the drugmaker to delve into genetic data for their research on a new medication.

In a statement on Monday, 23andMe said the fresh deal grants GSK one year of access to de-identified DNA information from around 80% of the gene-testing customers who have consented to share their data for research purposes. In addition to the genetic data, 23andMe will provide GSK with data analysis services.

“Under the new agreement, 23andMe will provide GSK with one year of access to anonymized DNA data from the approximately 80% of gene-testing customers who have agreed to share their information for research, 23andMe said in a statement Monday. The genetic testing company will also provide data-analysis services to GSK.

23andMe is best known for its DNA-testing kits that give customers ancestry and health information. But the DNA it collects is also valuable, including for scientific research. With information from more than 14 million customers, the only data sets that rival the size of the 23andMe library belong to Ancestry.com and the Chinese government,” Bloomberg wrote.

While 23andMe is popularly recognized for its DNA-testing kits that offer customers insights into ancestry and health, the genetic information it gathers holds substantial value for scientific exploration. With a database comprising data from over 14 million customers, the sheer size and depth of the 23andMe library are among the most substantial in the field, rivaled mainly by the data sets of Ancestry.com and the Chinese government.

23andMe is a human genome research company enabling users to study their ancestry, genealogy, and inherited traits. The company was founded in 2006 by Linda Avey, Paul Cusenza, and Anne Wojcicki to provide genetic testing and interpretation to individual consumers.

In 2007, Google invested US$3,900,000 in the company, along with Genentech, New Enterprise Associates, and Mohr Davidow Ventures. Wojcicki was married to Google co-founder Sergey Brin at the time.