Anne Wojcicki, the freewheeling queen of home DNA testing

Anne Wojcicki made a special effort to look smart when she addressed a US congressional panel on direct-to-consumer genetic tests of the kind made by her company, 23andMe.

This was her chance to persuade politicians that the ability for people to identify health risks by depositing saliva in a $99 kit should be encouraged as a way to empower patients rather than resisted as an ethical minefield.

The power dress she was wearing recalled her days working for a San Francisco hedge fund rather than her current role as Silicon Valley pioneer. But the attempt at conformity faltered when she fished in her bag for a pair of heels to replace the comfortable trainers she had travelled in. “I realised I had only brought one shoe,” she recalls. “So I was meeting a senator and I told him, ‘I swear I will have two shoes in 10 minutes but right now I only have one’.”

The gleeful way she recounts this clash between her freewheeling west coast spirit and buttoned-up Capitol Hill says much about the ebullient 41-year-old. Although an outsider in Washington, back home she is Silicon Valley royalty. Her estranged husband and father of her two children is Google co-founder Sergey Brin; her elder sister is Susan Wojcicki, chief executive of YouTube.

This makes her sound like a supporting actor but the junior Wojcicki sibling has big ambitions of her own. 23andMe, named after the 23 pairs of chromosomes that make up human DNA, has recruited more than 950,000 customers for its kits, which spot genes associated with dozens of conditions from Alzheimer’s disease to types of breast cancer. Armed with this information, people can be alert to catch illnesses early and modify lifestyle to cut risks, she claims.

Not everyone is convinced. Some doctors and regulators have questioned the utility and reliability of home testing. Critics fear it will simply fuel hypochondria among the worried well. Privacy advocates, meanwhile, eye with suspicion the company’s links to Google, an early investor. They see 23andMe as another example of Silicon Valley’s stealthy intrusion into the most private areas of our lives with the aim of profiting from the resulting information.

Ms Wojcicki brushes away such concerns, insisting that tough safeguards are in place to protect data. “When Amazon emerged people had these debates about whether people would put their credit cards online. It’s the same with health data. In 10 years’ time it will be like, ‘what was the big deal?’”.

Most who sign up with 23andMe seem to share her sanguine view. So far, eight in 10 have consented for their data to be used in research, putting the company in possession of one of the world’s largest repositories of genetic information. The company has partnerships with drugmakers including Pfizer and Roche to mine the database for clues about causes and cures for disease. In March it went further by hiring one of the industry’s top scientists to start its own research and development. The recruitment of Richard Scheller, former head of R&D at Genentech, the biotech arm of Roche, sent a message that 23andMe was not content with supplying raw data to big pharma; it wanted to come up with its own medicines.

The white coat is like a veil. It’s science; it’s big words; you can’t understand it. That’s the fallacy we’re trying to break

“I’m all about wildly unrealistic ex­pectations,” Ms Wojcicki says in an interview in the cramped bar of a hotel in Oxford, where the Yale-trained biologist has a speaking engagement at the UK city’s Museum of Natural History. “I have this vision that we really can transform drug discovery.”

Other guests look quizzically at the slight Californian as she predicts with increasing animation how traditional healthcare models are about to be transformed. Ms Wojcicki believes the digital revolution that has occurred in retail, travel, banking and media is finally arriving in medicine. 23andMe will be a catalyst and beneficiary, she says, of the shift from one-size-fits-all drugs administered by all-knowing doctors to personalised treatments in which patients control their own care.

“When I graduated from college in 1996 and the internet was taking off I remember this feeling that there was an open range where anything could be built,” she says. “I feel that is happening now in healthcare.”

This may sound like airy rhetoric. But it carries weight coming from someone who witnessed the birth of Google when her future husband set up the company with Larry Page from her sister’s Menlo Park garage in 1998.

Just as Google transformed access to information, Ms Wojcicki says 23andMe will help break the monopoly on knowledge held by medical professionals.

“The white coat is like a veil,” she says. “It’s science; it’s big words; you can’t understand it. That’s the fallacy we’re trying to break.”

Mistrust of medics runs deep in Ms Wojcicki’s family. Her grandmother blamed the death of a 15-month-old son on botched treatment for an accidental aspirin overdose. Decades later, Ms Wojcicki intervened when she believed her grandmother was being needlessly put in a hospice to die. “I paged every doctor until the CEO called and said, ‘who are you? You are wreaking havoc in my hospital’. I rented a car, put my grandmother in the back and drove her eight hours home. She lived for another two years.”

Parts of the medical and regulatory establishment have reciprocated with their own mistrust of Ms Wojcicki. In 2013, the US Food and Drug Administration said 23andMe’s products had not been tested enough for ap­proval as diagnostic devices. The regulator said false results might lead people to seek unnecessary or even harmful treatment. This was a severe blow and the company has since been limited to providing family ancestry information and raw genetic data in the US even as it pushes ahead with its more comprehensive service in Europe and Canada.

I have this vision that we really can transform drug discovery

Ms Wojcicki admits mistakes in not engaging with regulators closely enough. One journalist accused 23andMe of the “single dumbest regulatory strategy I have seen in 13 years of covering the FDA”. The company is slowly rebuilding the relationship after hiring people who “speak the language” of Washington.

Recent US approval for 23andMe to market a test for a gene associated with a condition called Bloom Syndrome was an important step forward. Ms Wojcicki insists regulators must also adapt.

“There are a lot of people in DC who have never been on Twitter or Facebook and don’t get what’s happening.”

This sense of Silicon Valley superiority rankles with some. A writer in Scientific American commented: “If there’s a gene for hubris, the 23andMe crew has certainly got it.” Ms Wojcicki is undeterred. “As a child I had a teacher who told me, ‘look, Anne, one person can’t make a difference’. What I love about the Valley is that the Valley has said ‘to hell with that . . . you can actually dream’. 23andMe can be the company that changes healthcare.”