Back when 23AndMe, a company that charges people to have their genome sequenced and interpreted, was making every possible move to piss off the FDA, some asshole with a blog noted (boldface added):
The thing that hasn’t been discussed: why is this a for-profit, private (non-sharing) venture? This is a mature technology–it’s built around Illumina’s SNP chip, so, beyond the human-friendly bioinformatics wrapper, it’s not clear what 23andMe brings to the rest of us. If having a humongous database with genetic and patient data is really that critical, then why keep it private (within the boundaries of HIPAA)? I find it odd that some of the staunch defenders of open access, well, everything seem to find little fault with locking away these data for private gain–which, as Matthew Herper noted when this scandal first broke, is 23andMe’s business model. If you want to claim 23andMe is doing this better than a non-profit consortium would (especially the gene finding part), how would you know?
Turns out said asshole was right (boldface mine):
Home DNA test results from the 5 million customers of 23andMe will now be used by drug giant GlaxoSmithKline to design new drugs, the two companies announced Wednesday.
It’s the biggest partnership yet aimed at leveraging the increasingly popular home genetic testing market, in which customers pay for mail-in saliva tests that are analyzed by various companies. 23andMe dominates the market…
23andMe patrons are asked if they want to participate in scientific research. The new agreement moves this consent firmly into the field of active drug discovery research.
“As always, if our customers do not want to participate in research, they can choose to opt out at any time,” Wojcicki wrote.
She emailed 23andMe customers after the announcement, including a quick link to opt out of the research…
Peter Pitts, president of the Center for Medicine in the Public Interest, said the companies should pay the 23andMe customers whose DNA is used in any research.
“Are they going to offer rebates to people who opt in so their customers aren’t paying for the privilege of 23andMe working with a for-profit company in a for-profit research project?” he asked.
“It’s one thing for NIH (the National institutes of Health) to ask people to donate their genome sequences for the higher good,” Pitts 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.”
Pitts also questioned whether there were solid protocols for protecting the privacy of 23andMe customers.
Note that you have to opt out, not opt in–I’m sure some of those emails will never be seen or received. What happens if you decide later to opt out (let’s say you didn’t see the email), after your data has already been used? And, of course, none of the customers will be making money from any future discoveries.
There is nothing more 21st century, ‘late capitalism’ that a massive drug company using data that other people paid other for.