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.”
This is my shocked face. It looks exactly like my unshocked face.Report
Will this drug actually be useful to help people or will it merely make money?
Because if all it does is make money, we should probably get the government involved.Report
Inflammatory diseases. So, it could be kind of useful.
But that doesn’t excuse the extraction method.Report
Let me condemn the extraction method in the harshest possible tones.
Will it help people with inflammatory diseases? Like, better than stuff on the market now?Report
What’s wrong with the extraction method? Voluntary actions, full disclosures, and the choice of opting out of research use.Report
I will admit that this goes against my Libertopian nature, but, for lack of a better word, it feels wrong. I know that the expression “the large print giveth, and the small print taketh away” is based in a reality that is served by lawyers, but at some point, we need to get away from that.Report
Last week, I only lived in a world with 23&Me. This week, I live in a world with 23&Me and an additional inflammatory disease treatment.
I guess I kinda understand why some people might be upset (“Hey! I deserve a piece of the profits for that medicine!”) but I’m not understanding the general sentiment that this is something that we want less of in the future.
I would like 23&Me to come up with a couple dozen more medicines and I’m not sure why we’d want to nip those medicines in the bud.Report
Let me be clear. I am not against what 23&me did, I am against the use of small print to achieve these goals.Report
It is ironic that we now live with cameras and recording devices in every home that can be activated without our knowledge, and a national database of DNA available to the police, and it just seems so normal.Report
At first I was gonna post “this is sort of like the copyright/IP debate” and then I realized that no, it isn’t sort-of-like, it’s exactly the copyright/IP debate, because what is more fundamentally your own property than your actual DNA?
And, y’know, yeah, there’s nothing in the TOS that says they wouldn’t not avoid doing something that wasn’t not this thing that they didn’t not refuse to do. That doesn’t mean people were informed that their DNA sequences might (and would) be exploited to generate revenue for third parties.
On the gripping hand, tho, remember how there was that art show where the guy just took Flickr posts and printed them out and sold them for $100,000 because it was “a famous artist” doing it? a-ha, Richard Prince. Writing on the wall, as it were. You control nothing that you do not hold in your hand.Report