23andMe Cashes In on Customer’s Data
Those Terms of Service agreements are not there for the fun of it, folks. Read them. Otherwise folks not names you will make lots of profit off of you, or things about you, without including you.
DNA testing company 23andMe has sold the rights to a new drug that it has developed using its customers’ data. It is the first time the company has signed a deal to license a drug it developed.
The deal for the drug, which is being investigated as a potential treatment for inflammatory diseases, is with Spanish pharmaceutical company Almirall.
“This is a seminal moment for 23andMe,” Emily Drabant Conley, 23AndMe’s vice-president of business development told Bloomberg. “We’ve now gone from database to discovery to developing a drug.”
The drug is likely to be the first of many the company licenses, says Tim Frayling, a molecular geneticist at the University of Exeter, UK. As 23andMe’s genetic database grows – it has doubled in the last couple of years – it will become more likely to yield medically useful information, he says.
23andMe has sold in excess of 10 million DNA testing kits. More than 80 per cent of their customers have agreed to their data being used by the company for research and by scientists trying to understand the causes of diseases and how best to treat them.
23andMe has already formed partnerships with several academic groups. In 2018, the company entered into a four-year collaboration with pharmaceutical company GlaxoSmithKline. It has also been trying to identify potential new treatments since launching its 23andMe Therapeutics division in 2015.
“In general, I think it’s really good that human genetic information is useful for drug discovery,” says Frayling. But he questions whether it is fair for the company to financially profit from genetic data that its customers volunteered for medical research.
23andMe’s terms of service state that by signing up for testing: “You specifically understand that you will not receive compensation for any research or commercial products that include or result from your genetic information or self-reported information.”