Genetic testing firm 23andMe has been using customer data in its research program for years, but now it’s putting that data in the hands of a partner. CEO Anne Wojcicki announced today that 23andMe is working with drug maker GlaxoSmithKline (GSK) to develop new drugs and treatments with help from all that genetic data the company has on file.
The deal is not a surprise and was probably inevitable. GSK has invested around $300 million in 23andMe, which went through a rough patch several years ago when the FDA forced it to revamp all its testing to comply with federal guidelines. 23andMe now shows a more limited set of disease factors for which there is strong evidence, whereas before it was rather cavalier about drawing conclusions based on your DNA.
Even though it doesn’t offer information on as many traits in customer reports, 23andMe still has a database of five million genomes. A significant barrier to research is often getting enough people to donate samples, but 23andMe has already taken care of that part. Not only that — people paid 23andMe for the privilege. The company has published more than 100 scientific papers based on its internal research.
The first major collaboration between GSK and 23andMe will involve studying the LRRK2 gene. Some mutated forms of this gene may have a connection to Parkinson’s Disease. GSK is working on drugs that might affect LRRK2 activity, and genetic data from millions of people will help researchers determine how the different variants of LRRK2 operate. 23andMe says all genetic data is anonymized to protect your individual privacy.
23andMe customers have been contributing their data to research for years, but actually partnering with a drug company changes the calculation a bit. A drug company could potentially create new products from your genetic data and then price those drugs so high that you can’t afford them. Donating genetic data for non-profit research is one thing, but letting commercial entities use it is another. Even if the results could benefit a lot of people, it doesn’t seem entirely fair for a company to create valuable new patentable products from your genes.
23andMe stresses that its customers can opt-out of making their data available for research at any time. 23andMe has two separate research consent flags: one for the company’s internal research and another for sharing data with the company’s partners. Presumably, you’ll need to opt-out of that second one to avoid inclusion on the GSK partnership. However, there’s no way to verify that your data doesn’t remain in the hands of 23andMe partners if you opt-out later.
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