GlaxoSmithKline acquiring a $300 million stake in genetic-testing company 23andMe
Thanks to a $300 million payout to 23andMe, GlaxoSmithKline will soon have access to hundreds of thousands of people’s DNA. And there’s one reason: money. “On Wednesday, the genetic testing company announced it was entering a partnership with pharmaceutical giant GlaxoSmithKline (GSK) to develop new drugs and therapies. As part of the collaboration, the company will allow GSK to peek at the (voluntarily shared) genetic data of millions of people who have taken 23andMe’s DNA home testing kits.” 1 (Don’t think for one second that this won’t eventually become a privacy issue in the courts.)
Glaxo and Silicon Valley’s 23andMe said they will “tap genetic data to find new drug targets and better select patients for clinical studies”2 and the four-year collaboration deal will grant GSK exclusive rights to drugs developed with the help of 23andMe’s data.
23andMe CEO and co-founder Anne Wojcicki said,
“By working with GSK, we believe we will accelerate the development of breakthroughs. Our genetic research—powered by millions of customers who have agreed to contribute—combined with GSK’s expertise in drug discovery and development, gives us the best chance for success.”3
Part of what the company asks of its customers is permission to share their genetic data with outside sources for research purposes, and this is no different. And even if they had originally opted in, customers will be allowed to opt out.
But with the potential monetary windfall, shouldn’t the customers get a piece of the action too? Some ethics experts are certainly advocating for that:
“It’s one thing for NIH to ask people to donate their genome sequences for the higher good,” Peter Pitts, president of the Center for Medicine in the Public Interest, told NBC News. “But when two for-profit companies enter into an agreement where the jewel in the crown is your gene sequence and you are actually paying for the privilege of participating, I think that’s upside-down.” 4
However, as 23andMe uses and “shares its customers’ genetic data after it has been pooled together and stripped of any information that would allow anyone to trace back its origins to a single person,”5 that seems unlikely. Even though recently they asked customers for “added permission to share their individual genetic and self-reported data with outside sources for research,”6 it’s still unlikely that either company will share any of their profits with the very people whose data has made their profits possible. (Keep this in mind, even though 23andMe says your data is stripped of information that would prevent identification, it cannot provide a “100 percent guarantee that your data will be safe in the event of a breach.” 7)
Potential Insurance Woes
There are also concerns among experts about data leaks from genetic testing companies like 23andMe that might allow insurance companies to screen out people with risky or less than ideal genes. And they already have FDA permission to “explicitly market tests that promise to inform customers of their genetic risk for up to ten different diseases and conditions” and this last March they got approval for “a test that can tell people about their risk for breast cancer, based on the BRCA1 and BRCA2 gene.”8
Again, 23andMe has promised it will never intentionally share any “sensitive information” but I trust that about as much as I trust Snopes to be the arbiter of truth. And the company is already selling off other forms of data (like survey results) so it certainly seems plausible.
Hal Barron, a former executive from the biotech firm Genentech, is leading a new strategy that will focus on the immune system, genetics and investment in advanced technologies. Speaking about the new partnership he said,“The idea of pursuing genetically validated targets provides us with an opportunity to have a significantly higher probability of success. It also helps with pace. We’ll be able to do programs faster. So it will help with two or three of the biggest challenges facing our industry.”9
In just over a decade, 23andMe has grown from a mere seller of DNA kits into one of the world’s largest genetic databases. You can bet we will be watching this partnership closely.