After Facebook was discovered to have sold the data of it’s user to outside companies for various things, the outrage and fallout was strong and continues to this day. The fact that such a transfer was spelled out in the user agreement did little to assuage the people who felt wronged by it. So it will be interesting to see how the customers of popular DNA testing kits 23andMe react to their samples being handed over to pharmaceutical giant GlaxoSmithKline for research and testing.
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.
Glaxo has invested $300 million in 23andMe and the companies have a four-year deal that gives Glaxo exclusive rights to collaborate with the DNA testing company to develop drugs.
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.
The reason the drug makers are so heady on the idea is a simple one: the hard part of doing genetic testing is getting enough material with specific defined conditions. Enter 23andMe, the popular at-home DNA testing kits.
“The over 5 million customers that 23andMe has gained access to is really many larger … 10 times larger, than some of the other databases out there,” he added.
One of the big obstacles to genetics research is getting enough people to donate their DNA and paying to sequence it. The 23andMe database delivers a huge number of customers who have already consented and whose DNA has already been partly sequenced.
The company can go back and do more sequencing on people who have genetic variations that are of interest.
“We are also excited to leverage the patients, to have them be part of this drug discovery process,” Barron said.
Now that it is public, we will see if the customers of 23andMe share the excitement, or, like Facebook users, regret not reading the fine print.