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Thread: The rise and fall and rise again of 23andMe

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    The rise and fall and rise again of 23andMe

    From Nature: How Anne Wojcicki led her company from the brink of failure to scientific pre-eminence
    https://www.nature.com/news/the-rise...3andme-1.22801
    11 October 2017

    Anne Wojcicki founded the consumer-genetics firm 23andme in 2006 and aims to expand its customer base to 10 million.

    There's a placard in Anne Wojcicki's office enshrining the attitude that nearly ran her company, 23andme, aground. Tucked behind a toy unicorn, the small, wood-veneered nameplate reads: “I'm CEO, bitch.”

    It was with this kind of brashness that Wojcicki set out to disrupt the health-care industry in 2006. Her goal was to put sophisticated DNA analyses into the hands of consumers, giving them information about health, disease and ancestry, and allowing the company to sell access to the genetic data to fuel research. But in 2013, that vision hit a snag. Wojcicki didn't think she needed regulatory approval to provide information about her customers' health risks. The US Food and Drug Administration (FDA) disagreed, and ordered the company to stop.

    The FDA action prompted months of soul-searching and strategizing on how to reorient the company to work with regulators. “You just accept at some point, you're regulated, and there's no Silicon-Valley, 24-hour, easy fix,” Wojcicki says.

    23andMe given green light to sell DNA tests for 10 diseases

    After years of effort, the pay-off came in April this year, when the FDA agreed to allow 23andme to tell consumers their risks of developing ten medical conditions, including Parkinson's disease and late-onset Alzheimer's disease. Surfing a wave of positive news, the company has since launched an advertising blitz to dramatically expand its customer base to 10 million people.......

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    Further quote:

    But for scientists, 23andme's real worth is in its data. With more than 2 million customers, the company hosts by far the largest collection of gene-linked health data anywhere. It has racked up 80 publications, signed more than 20 partnerships with pharmaceutical firms and started a therapeutics division of its own.

    “They have quietly become the largest genetic study the world has ever known,” says cardiologist Euan Ashley at Stanford University, California.

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    I've always felt that 23andme's big mistake was in trying to be the deliverer of genetic health information, like a doctor who runs a test, when I think they would have done better as a clearing house for researchers and scientists. Of course, a relationship that 23andme would financially benefit from. I imagine a scenario in which the customer logs on and is asked a series of questions with the promise of eventually discovering their results from the study. So, 23andme is never on the hook for specific results, the researchers are responsible for those claims, and perhaps the FDA wouldn't have become so agitated. And people would have learned more about their genetics, which is why they tested in the first place. As it is now, 23andme's health results are mostly rare, population specific genetic diseases that don't apply to most people and any studies done with 23andme data doesn't result in the customers learning anything about their own results or risks. Another mistake 23andme is making with haplogroups. By not updating them, testing them more rigorously, and not eagerly trying to acquire genealogical info about them, they are squandering a wealth of information. It's a pity.

    My feelings towards Ms. Wojcicki is she is overly focused on her vision of 23andme, to the point of tunnel vision, and although it's worked to an extant, I don't think she can be flexible enough to make 23andme everything it can be, especially not for the customers. I tested in 2008 and remember all the talk from her about it's our DNA and 23andme empowers us so we can use it to discover more about us. But every time I see the fanfare from 23andme releasing yet another study, using our raw data, there is no mention of how to check our results. And since most results now are from imputed data, and 23andme doesn't impute our data, no way for us to check on our own. I did find the information about 23andme not releasing our actual data to researchers interesting, though, and that researchers had to rely on what 23andme collated for them. Thanks Jean M for posting.

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    I, for one, will not buy any 23andMe tests with the V5 chipset. As far as genetic genealogy is concerned, I feel like the company has gone to the dogs.

    Jack

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    I agree with you, Jack, but think if 23andme did the model that I suggest, their genetic genealogy would be doing better as well. The biggest problem 23andme has is the disenfranchisement of their customers. And customers will be disenfranchised if they feel they aren't getting something meaningful out of the deal. Seems to me the model that even 23andme wants is dependent on some number of eager, engaged customers to answer surveys. Maybe they get enough but I contend that if 23andme focused more on making the process of participating in studies more engaging and organized, with a payoff of of learning results, people would be clamoring for their product. 23andme would sooner reach their stated goal of 10 million customers, many engaged and participating. I think people get stingy with genealogy if they feel they got taken advantage of, which many people do feel currently with 23andme.

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