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5Q: Anne Wojcicki, CEO 23andMe on knowing your DNA data (and being married to the boss of Google)

Darah Hansen
<span>Anne Wojcicki</span>
Anne Wojcicki

Anne Wojcicki barely had time to sit down before she was interrupted by an enthusiastic young man in a T-shirt bearing her company’s curious brand: 23andMe. He’s a customer and a fan of her efforts to make genetic data publically accessible, he explained. Would she mind posing for a selfie?

Wojcicki laughed, brushing off the suggestion that she’s any sort of celebrity when she returned to her seat moments later.

“It used to happen a lot more to my husband (Google co-founder Sergey Brin),” she said. (Though she doesn’t deny the connection to the Silicon Valley elite hasn’t filtered into her own experience.)

But more on Google later.

23andMe, so named for the 23 chromosomes in the human body, recently cleared Health Canada hurdles making it possible for customers north of the border to have their personal DNA analysed by the company’s private team of medical professionals gathered in California. The company markets the data as a means for consumers to better manage their personal health through a deeper knowledge of their ancestral lines and the particular genetic markers they carry.

Want to know why you crave coffee or how much, or little, cave man DNA runs through your blood? More practical users can also access to 108 health-related reports that list genetic risk factors for various health conditions, drug response, trait reports and inherited conditions.

The product, which includes a Canadian-made saliva-collection kit, went on sale this week for $199 and Wojcicki is banking on a positive response.

The launch comes as 23andMe continues to struggle for legitimacy in its home country. Last year, the US Food and Drug Administration issued the company with a cease and desist order on the grounds that its medical offerings were both unapproved and uncleared.

Wojcicki, a biologist and former Wall Street biotech analyst, argues the company aims to make healthcare more accessible and affordable.

U.S. sales have noticeably slumped as the debate rages on. The company, once named Time Magazine’s Invention of the Year, has yet to turn a profit. It has so far attracted about 750,000 customers, far short of its early goal of reaching one million.

Wojcicki sat down with Yahoo Canada Finance to talk more about her vision and why she remains a “perpetual optimist” for the future of the direct-to-consumer genomics testing industry. Of course, we couldn’t resist slipping in a question about what it’s like standing so close to the power that is Google.

First things first: How, beyond the odd selfie with fans, has your association with Google has helped to shape you as an entrepreneur?

I don’t think Google itself had any role, but I think being surrounded by people who truly want to change the world really had an impact. I used to complain about healthcare all the time when I was on Wall Street, and Larry (Page) was one of the people who was like, ‘You’re kind of annoying. Either you are part of the problem or you are part of the solution.’ That is the mentality: ‘What are you waiting for? Do something.’ So being surrounded by people who are really creative has been inspiring. Having that nurturing pod of people who want to see a difference happen in the world is probably the most valuable thing that I have gotten out of that.

You’ve talked about 23andMe as a social enterprise, that its application has the ability to change how we manage personal health. What do you mean by that and where did you come up with the idea?

I went to Wall Street randomly. I went from this very academic life to this world which, frankly, in those days, in the 1990s, Wall Street was the ultimate academic shop. I just sat around all day studying biotech companies and meeting the famous researchers and thinking about how the world was going to change and it was really phenomenal for the first five years. It was in the second five years that I saw that innovation dry up. It was sad to see this world of incredible potential and, yet, we are just going to reformulate cough syrup? It was depressing. Also, in that same time period when there wasn’t a lot of innovation going on, there were a lot of people who just wanted to make money. Health care is a $2.7 trillion industry (in the US). People get all excited about the internet, but healthcare is massive. It’s so much money that changing that machine is really hard. People make a lot of money off sickness.

But isn’t 23andMe also a means to make money? $2.7 trillion is a pretty tempting number that, I’m sure, a lot of entrepreneurs would like to tap into.

Yes, but the advantage of making money in this is that you can really do more good. You can be in charge of your own destiny and you can drive more change. We are not profitable right now, but when we do make a profit, we could actually take on more programs. For instance, there are still racial disparities in genetics research today. I would love to be able to fund that project and say, ‘We are give (the DNA kit) away free to these communities.’ Those are the types of projects I would love to be able to do. I believe we can make money and be a sustainable, profitable company but still do the right thing. I am trying to demonstrate that you can flip the model on its head and that a direct-to-consumer company that does not have high margins and, instead, focuses on volume can make money. Most of the healthcare system is focussed on high margin, low volume businesses. I want to change that.

I got the sense today that you are still trying to convince people that this is a credible company, that the data it generates has scientific merit. Is that right?

I do find it a little bit crazy that there are plenty of associations like cystic fibrosis or breast cancer (publishing research) that nobody argues about. Part of what we did is that 1) It is direct-to-consumer so, suddenly, everyone has access to it and 2) We also had a bunch of reports where we combined different disease risk reports that were on the newer edge of science and are less validated and less accepted by the traditional world. After a lot of feedback from individuals, we have removed some of these reports and we are trying to just really get the core, clinically actionable reports out there to consumers because I think it will be an easier path for adoption. We will keep doing research on some of the other disease-risk areas.

Explain to me exactly why I would want to spit into a plastic tube? What’s in it for me?

I believe that there is a lot of clinically actionable information in your DNA and you don’t know what’s in there until you look. It’s like: Do you want to get your blood test drawn to see if there is anything going on in your blood? Do you want to know if you have high cholesterol or tend towards heart disease? To me, it is that fundamental information about you that if there is something in there, in one of those reports, you might really want to know about it and be pro-active about it. So if you can pay $199 and get all this kind of information about yourself, these 108 reports, and there is potentially something you can do to affect your health, is it worth it? To me, it just becomes a personal choice. To me, it is very much about focusing on prevention and I like to be as informed as possible.

There has been concern since 23andMe launched in the U.S. that people won’t be responsible with the information – perhaps they might start self-medicating or flooding the doctor’s office with bogus complaints based on the DNA results. What’s your take on this?

There is a doctor at Harvard named Robert Green who did a series of studies that focussed exclusively on Alzheimers, which some could argue is one of the more anxiety-inducing reports. What he found is that people can really manage the information and they didn’t need genetic counselling. So, it led us to feel confident when we launched that people were going to be okay with this information. There is definitely a part of the population that says, ‘I am high anxiety. I don’t want this information.’ That is part of the reason why we make this a choice. You don’t have to do it. But if you want to be pro-active about health management then the information becomes an additional tool.

Does 23andMe have a responsibility to help people correctly interpret the data?

I think it’s important for 23andMe to teach people about risk. If you are at a higher risk for Alzheimers, for example, it’s about teaching people to understand that, although one variant is there, your lifestyle, your environment, other things factor in. It’s not telling you that you are going to have the disease, only that you have a risk factor for it. The more we can engage all of society in research, the more we will make discoveries and the more we will make cures. I am also perpetually optimistic. Having been in health care my whole life and loving the research world, there are so many good people who want to make discoveries and do the right thing and, if there is a huge database and consumers all pooling together and making discoveries, can help all the researchers do their jobs better. We will come to discoveries and treatments and prevention faster.

Is it a case of the public’s right to know versus the traditional gatekeepers of this information?

Without a doubt, one of the things that drove me crazy on Wall Street is that I would hear people talking about these “human subjects” and they would talk about people getting their healthcare in way or another and I realized that no one actually goes and talks to you. You don’t actually have a voice in the healthcare system and I saw that even with myself. I would go to a doctor and saw that how decisions are made for me. I thought, ‘I actually want a voice in my own treatment.’ It infuriated me. It drove me crazy. I should be in charge. You should have all your information. It is about you and you should be able to make decisions about how to be treated or how you want to live your life. I think consumers haven’t had a voice in basic research or basic science and I don’t think they have enough of a voice in the drug discovery process or in the healthcare system and how it functions. But I think there is a massive revolution going on that is about the consumer and consumer empowerment and I think 23andme is a key part of that. Your genetic information is one of the most fundamental parts of you and there is this potential for a genetics revolution in healthcare and that will happen faster by empowering you first.

With all the celebrity hacking scandals, particularly the nude photos that we have seen surfacing in the last month or so, it’s heightened people’s concern over the safety of digital information. How do you ensure that personal health information – data that could potentially be used against someone -- stays out of the hands of the wrong people?

The reality is, whether we are a commercial product or a government product, anything that is online has vulnerability. There is always a risk. But we have said multiple times that we have no business if I can’t protect your privacy. We spend a lot of time and energy on that. One of the things we have also noticed and said is that as much as your genetic information is important to you, from the outside world people are much more interested in hacking into bank accounts or naked photos. There is a lot of security innovation that happens in those industries that we can emulate. Part of how we set up our database is to have all the genetic information stored separately from all the phenotypic data. It’s impossible, technically, to link those two. We also ask customers to give us their real names, but a lot of our customers do not. Part of the reason we have empowered the individual is that it is relationship between 23andMe. We are not giving your data to anyone else. You own it. To me, there is always more of a fear, coming from the Wall Street world, if your insurance company pays for something, you don’t really know who gets that. I believe that, fundamentally, your health information should be owned by you and you decide who you want to share it with. There is always a risk-reward for everything and I think we try and be transparent about it because we want customers to make informed choices. But, overwhelmingly for me, there is a net benefit to having this information and having a large community of individuals trying to crowd-source discoveries. I think the net benefit of that is going to outweigh the risks.