Remember all those posts on DU promoting genetic testing? [View all]

[jberryhill]

A while back, it seemed like every couple of days there was a post on DU pimping those home DNA test kits. My favorite one was the idiot who was claiming that people who don't get them are really cowards, because they are afraid it will show undesired ethnic origins (as if all people didn't have a common ancestry anyway).

Well, how on earth did I manage to miss this, and I apologize if it was posted before, but it turns out that you have all been paying for the privilege of providing data to pharmaceutical companies:

http://time.com/5349896/23andme-glaxo-smith-kline/

A Major Drug Company Now Has Access to 23andMe’s Genetic Data

Consumer genetic testing company 23andMe announced on Wednesday that GlaxoSmithKline purchased a $300 million stake in the company, allowing the pharmaceutical giant to use 23andMe’s trove of genetic data to develop new drugs — and raising new privacy concerns for consumers.

The “collaboration” is a way to make “novel treatments and cures a reality,” 23andMe CEO Anne Wojcicki said in a company blog post. But, though it isn’t 23andMe’s first foray into drug discovery, the deal doesn’t seem quite so simple to some medical experts — or some of the roughly 5 million 23andMe customers who have sent off tubes of their spit in exchange for ancestry and health insights.

That was, incidentally, the play all along. Charge consumers money to fund your establishment of a huge DNA database, and then sell it off to interested purchasers. It pays at both ends.

https://www.wired.com/story/23andme-glaxosmithkline-pharma-deal/

23andMe's Pharma Deals Have Been the Plan All Along

But 23andMe, with its hybrid model, has been commodifying health and genetic data for years as it wades further into the field of drug discovery. In 2015, Forbes reported that the company had inked its first pharmaceutical company deal with Genentech, for $10 million up front, and up to $50 million if its data turned out to be useful for developing Parkinson’s treatments. Pfizer signed a data-sharing agreement of its own shortly after. That was back when 23andMe had data from only 650,000 consented individuals in its proprietary database. Its critics were unsure of the value of that information, self-reported as it was (and still is). But as the database has grown to the millions, differences in how customers interpret survey questions matter less and less to the company’s potential research partners, according to Spector-Bagdady.

“The hypothesis of this company was to circumvent medical records and just self-report,” Wojcicki told a room full researchers at an event on 23andMe’s campus in May. “Anyone can go get genomes. What’s really hard is phenotypic data.”

To get that kind of health and behavioral information, 23andMe is continually pushing surveys out to its customers. A few questions here, a few questions there; it’s kind of like going on a first date every time you log on. And people love talking about themselves. “We specialize in capturing phenotypic data on people longitudinally—on average 300 data points on each customer,” Wojcicki said. “That’s the most valuable by far.”

And, please, don't even bother to say "But I sent mine to Ancestry.com" and try convince me that giving your DNA to the Church of Jesus Christ of Latter Day Saints is a better idea.

https://www.huffpost.com/entry/ancestrycom-medical-research-juggernaut_n_7008446

Ancestry.Com Is Quietly Transforming Itself Into A Medical Research Juggernaut