Health IT, Hospitals, Startups

Anne W. and 23andMe: Still cool but still stalled

Anne Wojcicki made a strong case for getting your DNA sequenced to the crowd at SxSW but she had no easy answers for questions about privacy or the FDA.

 

It was great to see a digital health leader on the keynote stage at SXSW Sunday. Anne Wojcicki spoke after Neil De Grasse Tyson and before Chelsea Clinton in the five-day festival, so she was in good company.
I have never heard birth control discussed on a big stage in front of thousands of people, so that was great too. (Remember: women’s health is not a niche market). Wojcicki put genetic testing in a context that everyone could understand with her birth control example.
“I’ve been on birth control, how many of you have been?” she said. “Now how many of you have had a factor five blood test to see if you are at higher risk for blood clots.”
Many women raised their hands in reply to the first question, but no one did at the second. Wojcicki also used benadryl as a way to put genetic testing into every day life. The drug makes some people hyper but most people get a sedative effect from it.
“You don’t want to give your kid a benadryl when you’re getting ready for an overnight trip to Europe if benadryl is going to make him hyper,” she said. (She lost her image of easy-to-relate-to, engaged patient at that point and slipped back into former Wall Street trader who is part of a famous, rich family persona.)
After sharing these common examples of personal drug interaction, she moved on to more complex examples like being a carrier for the BRCA gene or having pseudocholinesterase deficiency. This added to the picture of the super-smart consumer she was building: If you have your genes tested, you are an engaged patient who can make the most intelligent choices about drugs and treatment and your future. She didn’t go as far as as saying, “You’ll never get sick again,” but that was the message you got by reading between the lines.
By the end of her presentation, 23andMe’s spit test was the equivalent of the new cool app that everyone downloads to their phone during the session while an entrepreneur is pitching.
She even worked some doctors’ resistance to 23andMe due to the messed up payment structure that pays more for treating sick people than helping people stay well.
“One doctor told me, ‘The problem with your company is that you generate too many non-billable questions,” she said.
Digital health deserves this kind of stage to talk about all the excellent and important work that so many people are doing. 23andMe may have mishandled its dealings with the FDA but the FDA is also struggling to be effective in the 21st century. It is trying to adapt and keep up with the pace of change, but still isn’t moving fast enough. It is ridiculous to qualify the test and reporting of results as a medical device.
After Wojcicki explained the magic and everyday practicalities of genetic testing, Kara Swisher came on stage for the Q&A session and burst the 23andme bubble. There were no softball questions. She asked whether the company was stalled, how Wojcicki thought the FDA would proceed, and even whether consumers could or even should trust their genetic information to a private company.
“I had a health issue a few months ago and you knew about it, and I didn’t know how to feel about a private company having my information,” Swisher said. “I don’t like the idea of Google having my gut bacteria on file because they could monetize it, you know they could.”
Wojcicki didn’t have a good reply to this concern, simply repeating that having a gigantic public database of genetic information would do more good than harm and that 23andMe has strong privacy protections in place. She said that the company has 650,000 genetic profiles in its database and has been busy responding to partnership requests.

Veronica Combs

Veronica is an independent journalist and communications strategist. For more than 10 years, she has covered health and healthcare with a focus on innovation and patient engagement. Most recently she managed strategic partnerships and communications for AIR Louisville, a digital health project focused on asthma. The team recruited 7 employer partners, enrolled 1,100 participants and collected more than 250,000 data points about rescue inhaler use. Veronica has worked for startups for almost 20 years doing everything from launching blogs, newsletters and patient communities to recruiting speakers, moderating panel conversations and developing new products. You can reach her on Twitter @vmcombs.

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