On July 25, 2018, GlaxoSmithKline (GSK), a major pharmaceutical company based in London, announced that it “has made a $300M equity investment in 23andMe,” a popular consumer genetic testing company. In return, GSK will have access to the genetic data of 23andMe’s five million customers.
The Details Behind the Deal
The collaboration allows GSK to have exclusive access to 23andMe’s user data for four years. GSK intends to use the information from each user’s genetic profile for drug research, stating that the focus will be “on research and development of innovative new medicines and potential cures.”
23andMe, whose technology has the power to trace ancestry as well as identify genetic health risks, is currently the “world’s largest genetic and phenotypic resource,” and has records of about five million people’s genetic information. 23andMe’s dataset is a great advantage for GSK. The Atlantic writes that “the idea is to leverage large datasets to find people with unusual mutations that can point to targets for new drugs.”
For instance, Forbes and NBC News reports how GSK has already been working on a drug that targets a gene called LRRK2, which is related to some cases of Parkinson’s. GSK has had to test about 100 Parkinson’s patients to find a single prospective test subject since only about 1 percent or 10,000 of 1 million Americans with Parkinson’s has the disease due to LRRK2. This process has made progress relatively slow. Forbes explains that since 23andMe “already has 250 Parkinson’s patients with the LRRK2 gene variant who have agreed to be re-contacted for clinical trials,” GSK can develop its drug much more efficiently.
In addition to Parkinson’s disease, 23andMe lists on its website that it can report whether users “carry genetic markers associated with risks for certain health conditions,” and can test for BRCA1/BRCA2, celiac disease, and late-onset Alzheimer’s disease, among others. For many, voluntarily allowing 23andMe to use their data can serve a common good.
Data and Privacy Concerns
Upon this announcement, Anne Wojcicki, the co-founder and CEO of 23andMe, has also noted that 23andMe has given customers the option to “opt-in or opt-out at any time.” Furthermore, each user’s information will be anonymous and given voluntarily. The announcement states that “for those who do consent, their information will be de-identified, so no individual will be identifiable to GSK.” However, Kristen Brown, a reporter for Bloomberg, attempted to delete her data from multiple genetic testing companies. Regarding 23andMe’s records, Brown reports how she couldn’t “fully delete it” because she had already agreed to “contribute [her] information to research, and the company couldn’t retract it from studies in progress.”
Another concern is that the dataset may be biased. 23andMe charges $69 for its ancestry kits and $139 for health and ancestry kits, which can be an economic barrier. Dr. Arthur Caplan, head of the division of medical ethics at the New York University School of Medicine, tells Time that “the database will be skewed toward middle and upper class [sic] people…it kind of reinforces the issue about, who’s going to get the benefits of mapping the genome?” Instead, Caplan believes that the National Institute of Health’s (NIH) project called, All of Us, is “a better example of informed consent, because it clearly explains how, when and where individuals’ data will be used” and consumers donate their data instead of having to pay for a service.
If consumers who have used 23andMe’s services before would like to close their account, they may find more information from 23andMe’s website here, and while “any research involving your data that has already been performed or published prior to our receipt of your request will not be reversed, undone, or withdrawn,” any samples that users sent in will be discarded.