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Linda Avey on Mother Jones’ 23andMe Story

In response to my last post about the Mother Jones story on DTC genomics company 23andMe, I got a (friendly) email from Linda Avey, who left the company in September to start an Alzheimer’s research foundation called Brainstorm. Avey wrote that although she no longer speaks for the company, she felt it was important to clarify the details of “a revenue model I was hypothetically describing,” when quoted for the MoJo article.

Here’s what Shannon Brownlee’s article, “Google’s Guinea Pigs” (a dig at 23andMe cofounder Anne Wojcicki’s domestic and business partnership with Google’s Sergey Brin), says:

As it turns out, 23andMe’s long-term revenue model has little to do with selling [individual, DNA test] kits and everything to do with selling customer information to drugmakers and others in need of human guinea pigs for clinical research. The company hinted at this in July by calling for people with specific diseases to take part in an in-house study for no pay, other than a $300 price break on a personal genetic profile. “We are the broker,” cofounder Linda Avey conceded to me in a recent interview. “We make the connection between [the drug firms] and the individuals.”

Image: Luca Sarton

Linda Avey. Photo by Luca Sarton.

Avey, in her email, explained that while 23andMe would like to be a broker between individual customers and researchers (including drug makers), they would be brokering only “information,” not “data.” This, she writes, is “a subtlety that is often disregarded.”

From Avey’s email:

23andMe theoretically could provide the service of linking outside companies … with people who match specific criteria (even down to their genotype) needed for clinical studies. This is a very difficult task for these companies and for hospitals/doctors (if you walk past bulletin boards in medical centers, you often see very low-tech notices with a phone number on a pull-off tab hoping to recruit patients into studies).

The individuals have complete control over whether they decide to join, and at NO TIME are their data ever SOLD without their explicit consent. 23andMe could receive service fees (again, not necessarily related to the exchange of any data) from the recruiting organizations, owing to the significant value this service provides. By giving notice to subsets of customers about clinical studies that are TARGETED specifically to them, 23andMe brokers the efficient flow of information (not data!) between these parties, which is beneficial (hopefully) to both sides.

Customers who have opted out, Avey says, would never be contacted, but “those customers who decide they’re interested in study opportunities could then contact the study coordinators directly. So it’s really more about providing a ‘matching’ service.”

Avey also takes issue with Brownlee’s contention that direct-to-consumer testing is a long way from being practically useful on an individual level. Writes Avey: “What about the people who are finding out they’re carriers for cystic fibrosis, sickle-cell or hemochromatosis? Or who find a new relative? Or who didn’t know they had African heritage? Or that you have sensitivity to warfarin? There’s no telling what you can learn about your genes now, or in the future, especially as our understanding improves.”

The Catch-22: The only way our understanding will improve is if researchers can get access to the personal genomic and health data of many, many more people. The shift in revenue model from a consumer-focused business to a corporate information brokerage in which the consumer still plays an indispensable part, will take savvy and transparency to pull off. (It should also drive down prices of DNA reading for consumers.) But it’s a model that other providers seem ready to embrace publicly — expect an announcement from another DTC genomics player next week with details of its “new, fully-integrated genome service, with new pricing, specifically aimed at improving genetic discovery for researchers.” [Emphasis mine.) Sound familiar?

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