23andMe to Share DNA data with GlaxoSmithKline

23andMe

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.

NBC News:

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.

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4 thoughts on “23andMe to Share DNA data with GlaxoSmithKline

  1. My employer has a “health questionnaire” we can do in order to get $250 off our deductible for the year. I have never done it because I am concerned there’s not enough privacy on our data. And I don’t fancy Jenny Craig or whatever damn diet plan they’ve decided to “partner” with spamming me about weight-loss. (I know I need to lose some, I just don’t want my wallet to get lighter along with my butt). Or getting endless “wellness” spam about reducing stress and doing more exercise because I have high blood pressure.

    Oh, I expect that kind of targeted stuff is coming, but I want to stave it off as long as possible.

    A colleague of mine with fewer privacy concerns and less….delicacy….about bodily functions than I have took the questionnaire and described it as “intrusive,” and that’s enough to tell me I don’t want to do it until I must do it.

    I’ve long been curious about my ethnic makeup (though I can guess and I also know those tests aren’t that accurate) but what kept me from doing any testing was “Who’s gonna get my data and what are they gonna do with it?” This doesn’t allay my concerns. Even if the data are allegedly only used in aggregate and anonymously….well, think of all the places that have had credit card number breaches…

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    • I sort of had the same thought. The DNA thing doesn’t bother me, as the government took a sample during basic training so whatever can be gleaned from that I’m sure has been by now. But I can see how people would be uneasy to upset by it. We will see how it plays out.

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  2. You know…

    Over 15 years ago I quit my job because the FAA was requiring all contractors to get finger printed and compete a 30-50 page report on their travel, birth place, etc. It was, essentially, a “light security clearance”. Of course, my company made it a condition of employment. So I quit. No one needs that info and I damn sure am not giving them my finger prints to sit around in AFIS.

    You think I’m getting genetic testing when that stuff is going to be put into the same type of database or for research that will cure cancer with my DNA and I’ll never get a dime for it? Not on your life.

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