Anne Wojcicki’s Quest To Put People In Charge Of Their Own Health

By Stephanie Lee San Francisco Chronicle.

In March 1950, David Hochman, 16 months old, unscrewed an aspirin bottle and swallowed the pills.

His mother saw the empty bottle and called a doctor in shaky English. She and her husband, both Russian immigrants, were supporting three children in suburban Los Angeles on his earnings as an artist. Poor and intimidated, David's mother didn't object when the nurse on the phone suggested putting the boy to bed. Then he became violently ill.

The first hospital pumped his stomach and released him, still sick. The second turned them away because the Hochmans lacked proof of payment, a policy that's now illegal. By the third, it was too late.

Esther, David's then 10-year-old sister, never again trusted the health care system. But she believed that her parents, too, had failed -- to question authority and make educated decisions on their own. When Esther later raised three daughters of her own, the youngest, Anne Wojcicki, took those lessons to heart.

"It was grilled into me: If you don't take care of yourself, no one will," Wojcicki, 41, said. "One of the things I find insulting in health care is how many decisions are made for you and you're never given this chance."

Wojcicki (pronounced wo-JIT-ski) made it her mission to upend health care. In 2006, she co-founded 23andMe, a Silicon Valley company out to pool the world's DNA, give individuals access to their genetics, and in the process transform the way drugs are made, diseases are cured and patients are treated. In that crowd is her husband, Google co-founder Sergey Brin, who learned from 23andMe that he has a genetic mutation putting him at high risk for Parkinson's disease.

"To be able to answer thousands and thousands of questions," she said, "you want tons and tons of data." So far, 23andMe has attracted nearly 1 million customers and more than $126 million in venture capital, making it one of the most hyped health-technology firms in the world -- and its CEO one of the most influential women in tech.

But not everyone thinks Wojcicki should be the one to collect their data.

Genetic profiles 23andMe, named for the 23 pairs of chromosomes in humans cells, uses DNA to tell people about their ancestral origins and risks for medical conditions.

Customers pay $99 to receive a kit in the mail, spit into a tube, send it back and later log onto a website for their results.

But in late 2013, the Food and Drug Administration forced it to stop offering information about risks of medical conditions, concerned that the interpretations were inaccurate and leading people to make rash decisions without proper guidance.

Giving people genetic information may sound straightforward, but it is uncharted territory for both the FDA and companies like 23andMe.

"They've had a very intense marketing campaign that's made a lot of bold claims, both about the health benefits of their test and about a broader vision that they claim this thing will empower us and democratize health care," said Marcy Darnovsky, executive director of the Center for Genetics and Society. "Those claims really need to be critically examined."

Scientists traditionally test a hypothesis in a group of animals or people, and try to understand why it works or fails. 23andMe wants to flip that process on its head: to use enormous data sets -- in this case human genomes -- to identify problems, solutions and trends.

On top of submitting DNA, users answer seemingly never-ending questions about their backgrounds, health and lifestyles. Their 200 million responses can show how genes influence lives. Is it healthier to follow a low-fat or Mediterranean diet? What separates people who get cancer or Alzheimer's disease from those who don't? And then there's the water-cooler fodder: What percentage Neanderthal are you?

Customers can withdraw from studies or the service altogether, taking their data with them. But more than 80 percent agree to participate in research, patents and other possible commercial endeavors for no compensation.

Wojcicki grew up in Palo Alto, not far from 23andMe's Mountain View headquarters. Her father, a physics professor at Stanford University, and mother, a journalism teacher at Palo Alto High School, encouraged their children to pursue whatever interested them. The oldest, Susan, is CEO of YouTube, and the middle daughter, Janet, is an epidemiologist at UCSF.

Early learner Anne learned to do everything young: ride a bike, read, swim, figure skate (she competed in college). She also became fascinated by science early, reading her parents' medical textbooks. As the youngest child, she learned to get her way through charm, not force. "She actually managed to do more damage while being charming than any other way," Esther Wojcicki recalled.

After graduating from Yale University in 1996 with a biology degree, she spent a decade as a Wall Street health care analyst, watching executives make billions off illnesses and, as she put it, claim it wasn't their responsibility to figure out why their drugs didn't work. Her disenchantment peaked when she sought treatment for a suspected intestinal blockage.

"I went to the doctor, he sent me out and told me to go find a radiologist myself," Wojcicki recalled. "I was literally on the street corner, my pants are undone and I'm vomiting in a trash can. And I was in so much pain. ... It was one of those moments, like, 'That's health care.'"

Around 1998, Wojcicki met Brin and Larry Page, Stanford students who were working on a search-engine startup in her sister Susan's Menlo Park garage. That startup eventually became Google.

Having invested in some of the first genome-sequencing companies, Wojcicki was toying with the idea of starting her own by the time she left Wall Street.

In 2006, Wojcicki, biologist Linda Avey and business executive Paul Cusenza bonded over an excitement for new saliva-based DNA-extraction kits. Maybe the technology could be used to interpret genetics for customers, the three thought, and they founded 23andMe. (Avey and Cusenza have since left.)

From the beginning, 23andMe's hefty financing and high-profile backers set it apart from other startups. Aside from personal investments by Wojcicki and Brin -- the couple married in 2007 -- Google put up a combined $6.5 million in the early years, and its venture arm later invested as well.

Shared mission The two companies are intertwined in mission, too. 23andMe wants to do for health what Google has done for search: make massive quantities of information digital, accessible and personal.

"The vision is if you have all this data in the world, research should be like a data query," Wojcicki recently said at a conference. "It should be like going online and just running a search."

On Nov. 22, 2013, the FDA ordered Wojcicki's company to stop selling its health reports.

23andMe, the agency said, had not submitted clinical data that proved it lived up to its claims. The FDA worried that inaccurate results, or results given without a medical professional's guidance, could lead patients to, for instance, seek chemotherapy or surgery for nonexistent breast cancer.

To some, it was a textbook example of Silicon Valley's credo: moving fast and breaking things without heed for rules. "The FDA is a public agency, charged with protecting public health, doing its job in a way that gave 23andMe every opportunity to comply, and (it) finally lost patience with a company that seems to think it doesn't have to play by the rules," Darnovsky said.

'So many uncertainties' But president Andy Page said 23andMe wasn't trying to deceive. Page, who came from the luxury-retail site Gilt Groupe, said he and his team were so naive, they had to double-check to confirm that the FDA's letter meant an end to the health interpretations. At the start of 2014, Wojcicki recalled, "Andy and I would sit here and be like, 'We just don't even know what direction to go because there's just so many uncertainties.'"

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