You’ve probably seen ads and commercials for DNA testing companies — they’ve spiked in popularity over the past few years by successfully convincing customers to sign up and learn more about their ancestry. Some, like 23andMe, also offer customers a look into their health, with predisposition and wellness reports. If you’ve used one of these companies, there’s a good chance that they haven’t kept your results private. 23andMe recently sold the rights to a new drug it developed using customer data.
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The popular DNA testing company developed the drug with Spanish pharmaceutical company Almirall. It was created as a potential treatment for inflammatory diseases, such as lupus and Crohn’s disease. 23andMe vice president of business Emily Drabant Conley told Bloomberg, “This is a seminal moment for 23andMe. We’ve now gone from database to discovery to developing a drug.”
23andMe has sold more than 10 million DNA testing kits, and the majority of customers agreed that their results could be used by the company for research. Drabant Conley said the company is also pursuing other drug targets. “We had this hypothesis five years ago that we could leverage our genetic data set to develop better drugs, and now we’re seeing this come to fruition,” she said.
23andMe’s terms of service include the statement: “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.” However, how many customers are paying close attention? Would they be so quick to agree if they understood how profitable their DNA information could be?
Sales of direct-to-consumer DNA testing kits rose sharply in 2017, driven in part by large advertising budgets and a growing interest in discovering ancestral lineage. But research has shown that nearly 40% of medical data from these tests may be false positives.
Clinical confirmation is vital before undergoing further tests or treatments based on DNA testing from at-home test kits as these tests were never intended for medical use. Your DNA contains profoundly personal information about your health, personality and family history, which may be used to discriminate against you in the workplace, affect your ability to acquire health insurance and is often sold to research companies — which is exactly what’s happening here.