Ann Wojcicki: Co Founder & CEO of 23andMe

I'm here with Anne Wojcicki, creator and co-founder of 23andMe. So can you tell us a little bit about personal genomics and your interest in that field? So I started the company 23andMe back in 2006, and I've been a huge fan of getting individuals engaged with their genomes. And so 23andMe launched with the idea that everyone should have access to their genetic information, that the technology was here, that you should have direct access, it's your information, you should have it, and we wanted to enable it for everybody. What about people who think that that sort of information is dangerous to arm the public with? Yeah, I've had some interesting conversations actually at this conference, and somebody yesterday was telling me about what was called the red flag laws that were in the UK back around the time when cars came out. And apparently cars, when they first came out, were seen as so dangerous that people had to stand in front of them and wave a red flag while they were moving. And so I think there's a little bit new technology, and every time it comes out, people are afraid of it. And I think that in 10 years, we'll look back and say, like, what was all that fuss about? But right now, you know, part of the job of 23andMe is educating people to understand what are the benefits of genetic information, how is it going to help society, and then how do we manage the risks? What got you interested in this field in the first place? Interesting, when I was about five years old, I remember my mom talking, she was yelling at my sister about something about her genes. And I was like, what do you mean? Like, she's wearing shorts. And it was the first time, it was the first time that I heard the word genes. And then I was really intrigued. And I kept asking questions about it. And she was like, like, like, does that determine what you are? And she explained the concept of nature versus nurture. And like, well, there's some things that are in your genes, but then your environment affects some things. And I just like, it just stuck on me. Like, I'm so interested to know what is the deck of hands that I've been dealt? And like, what it is in my environment that I can change? And for me, it was sort of that most optimistic view of health, like, we're all born with certain certain risks. And we all have some something that we're at higher risk for. But like, what it is, what's in my control, that I can actually change in my lifestyle and actually potentially have a better outcome? In your perfect world, would everyone know as much of our genetic information as as scientifically possible? I believe that in the next 10 years, everyone will have their genome, without a doubt. And your company's experienced some problems with the FDA in terms of regulating. Can you speak a little bit about that? Yeah. So the FDA, you know, majority of medical, majority of laboratory developed tests are run through what's known as CLIA, which is under Medicare. And the FDA has came to us and said that we are a medical device and that we need to be regulated under medical device law. So we are working with the FDA to comply from what was CLIA standards that that the other laboratory developed tests were using to becoming a medical device. So we're working on that. We hope to submit something to the FDA soon. And you know, the FDA has been very engaged and we're eager to help, you know, understand how the entire genome is eventually going to come be accessible to everyone and be regulated in the appropriate way. So do you think that you might be back on the market within a few years? Well, we're still selling right now. So you can still get your ancestry information. You can get your raw genetic information. But I am hopeful that at some point in time, we will be able to be back on the market. And what brings you to a conference like Big Data? Well, the other aspect of 23andMe is that we're focused on empowering individuals with their information, but then essentially having sort of a consumer driven research model. So instead of just having the academic world saying like, okay, I'm at Stanford and I wanted to study psoriasis. I have to recruit a thousand individuals. Here's all my thousand human subjects. Like let's flip the model and say, here's all the people. We want to study everything and I don't want to be a human subject. I'm a person and I want to be involved and I might want to be in psoriasis research, but maybe I also get migraines and maybe you have arthritis and I want to help you. So instead of actually having these little fiefdoms where everyone is owning their own research cohort, enable the consumer to be in charge and then share with all the academics. So it sort of empowers the person to decide where they want their data shared? Empower the individual to say, I want to participate in research and potentially even to direct it and saying like, I'm going to get together 5,000 people who all have Parkinson's disease. I mean, it's one of the things that we've done is that we have created these communities. So we have 10,000 people with Parkinson's disease. They answer questions. They can see how they compare to other individuals. They can learn a lot from each other and then we collaborate with all these researchers on enabling them to get access to the aggregate data. So we want to, we want to be able to say like you, the individual, when you participate in a study that you know a little bit about where it's going and that you can answer questions over and over again and know that 23andMe is trying our best to enable everybody in the world to get access to information. Are there some unique privacy concerns with putting this sort of information in the hands of the private market? Well, would you rather give it to the government? I'm not sure. I guess. It's a really good question. I just say, I mean, I think that one of the things 23andMe has done is like we, we've always said we have no business model if we can't guarantee your privacy. So we do everything that we reasonably can to protect your privacy. So at the same time, we've always defined it as when you order from 23andMe, we do not have a legal chain of custody, meaning that if you order it, I don't know exactly which kit went to which individuals. And when you sign up, it's up to you to decide if you want to share it with anyone. So you might get your genetic information and you say, I don't want to share it with anyone. It's just for me. Or you might say, I want to share it with my physician. I want to share it with my mom. And I think what's different is that when you, when you traditionally go through the medical system and if you have your insurance company pay for your genetic information, that is then shared with your insurance company. So part of what we've actually done is I try to actually change the model so that you are in control and that you know who is getting access to your genetic information. So with 23andMe, we never share individual level data without your explicit consent. Do you think we have to change the way that we train doctors to be able to accommodate interpreting this type of information for patients? I think that we, I think that physicians are definitely going to have to have a genetics component in their training. And I know that there's some that is taught now, but I think that genetics in the future will definitely, it's going to be an important part of medicine. And so, and I also think that genetics are an important part of preventative care. And I think that that's where there's a real shift, especially with the changes in healthcare reform and the need to keep people healthier so that if I know you're really genetically higher risk for a certain condition or you know, you're high risk for factor V Leiden, you're high risk for a blood clot and you want to get pregnant, how do I actually manage you and getting that information and making sure that all physicians are aware of like, this is actually how you triage it. And I think what's going to be most important is getting it into the workflows and into the various societies so that they all can think about genetic information is going to be, you know, omnipresent. How do you manage that? It's really going to be a paradigm shift. It's pretty awesome. It's really great. Thank you. Well, thanks so much for talking with me and enjoy the rest of the conference. Thanks so much. Yeah, I love it. This is Behind the Scenes at Big Data.