Why 23andMe Is Betting Big On An Open Science Model

23andMe as this nonprofit to be the foundation that is going to help accelerate discoveries for everybody.

Of course. So fun.

It's fascinating.

Yeah. To say the least.

Oh, I think I spent 10 years, 96 to 2006, investing in healthcare companies, and it was amazing like going and meeting CEOs and learning about the biotech space. And I looked at areas like xenotransplantation, gene therapy, and genetics. And it was amazing to see the innovation and to be able to call up all these scientists, researchers around the world and learn what was going on. But over time I started to realize as well that there was all this innovation, all this data being collected, all this money going into a system that only managed you once you were already sick. And I remember meeting with different hospitals and insurance companies at one point and even researchers and thinking like, well, do you ever try to keep people out of the hospital? And they were like, no. And I remember I would give this example in type 2 diabetes where I'd say there was like $300 billion being spent on type 2 diabetes and hundreds of companies working on it, but there was only $10 million with the CDC going into the diabetes prevention program. And I felt like that fundamentally was wrong. That was the systemic issue: we monetize, there's always a path for reimbursement and payment once you have a disease. But if you never have heart disease or diabetes, if you never show up at NYU, who makes money? No one. No one. And so I felt like that was a fundamental issue.

And so 23andMe was really inspired by my time in New York and working with a lot of the HIV activists, where I saw that a group of people who came together to advocate really could make a big difference. And I kept thinking that I don't just want that for one disease area. I want every single group to be active for their own prevention, for their care, for having the right type of treatment. And 23andMe was born out of this idea that the only way healthcare is going to change is two things: one, you the individual have to be in control, and second, it has to be outside of the existing system because the incentives in healthcare as it is are so focused on making money. So you have to be entirely outside, and I need a direct relationship with you. So 23andMe really came out of that idea, and that's what was so radical and revolutionary at the time: we were the first real direct-to-consumer, giving you your genetic information, which is your foundation of you and the foundation of personalized healthcare.

I come from a family of strong advocates. And we've spoken about this before. So my favorite thing is my sisters and I used to always say that we would go to the doctor and it was always slightly embarrassing because my mom was ready to argue with whatever medical advice we were getting. So we would go to Kaiser and the doctor would give some diagnosis, and my mom was ready to ask tons of questions, and there was no way we were leaving until we got those questions answered. So there was no such thing as a 30-minute appointment in our family. And my mom was very early; we were always doing our own research and getting second opinions. And part of this came from the fact that my mom had a little brother, David, who ate a bottle of aspirin when he was 18 months old. He was obviously sick, and my mom watched her parents take him from doctor to doctor, and people wouldn't take him. They said, 'Just take him home. He's fine. Have him take a nap.' And he got increasingly worse. And my mom recognized that if you don't advocate for yourself, no one will. In the case of David, they finally got someone to take him, and when they called in the morning, they said, 'He's in the morgue.' So my mom was always traumatized over that sense: David needed medical care, and the health care system told him to take a nap. So her point, and I think that's where I've always resonated with doctors who really respect that you as the individual know your body, and if you think there's something really wrong, we should listen to you and flush that out. So we were raised that way. And 23andMe, the one thing I've always hated is when doctors won't answer my question. For instance, I was at the dentist and I got kicked out of the dental chair because she wanted to x-ray my mouth, and I said, 'Why? I have no cavities, no pain. Why do you want to x-ray my mouth?' And she said, 'I just need to.' And I said, 'But why?' So we just agreed to separate. So 23andMe, I felt confident when I started that the right thing to do for people was to put the technology of genetics in the hands of the individual and give them a path for owning that information. And the thing I realized is that the dirty secret of healthcare is that you're actually in charge of yourself; it's just that the system makes you feel like you're not.

It was so obvious. For me, it's always been so obvious. Genetic information, I think in some ways I've had this confidence since day one. I think the healthcare system is wrong, and I think the reasons why people are not accepting genetic information is not because the information is not valuable; it's because they just don't have a way of paying for it and it generates questions that they don't currently monetize. So for example, no one argues with the fact that every single person could benefit before pregnancy from having information about whether there's something that could potentially be passed down to your children. Why are kids being born and any parent being surprised? Because there is a technology: you can do genetic screening to know if your child is potentially going to have something hereditary. You might be okay with that, or maybe you want to do embryo selection. I just dealt with that, and you get to decide and have the agency over knowing what the future of your child is. And for people who have a hereditary condition like the BRCA variant, they might decide they want to make sure their children don't have that variant, so they choose an embryo that doesn't have it. Then I look at people who are surprised in their 30s, 40s, 50s who suddenly have a breast cancer diagnosis and never knew they were BRCA positive. Why are they not being screened? Genetic testing is a few hundred dollars. So it can shine a light on many different gaps in the system and illuminate things about yourself that you should know. Every single person can benefit from understanding their genetic health risks, and that will help drive the right kind of personalized care for you.

Yeah. I think the hardest day for me was the bankruptcy. It was devastating because I think it was avoidable. People are always confused about exactly what happened, but it was the board at the time who made the decision to go with it. Part of it was because of the outstanding liability from the cyber incident. It was devastating to me because bankruptcy always sounds like the company's gone. It's confusing: what's going to happen with the data? Attorneys general started telling people, 'What are you going to do with your data?' And I was out of control. I know the company like 23andMe is run by people who care about the ethics of each individual customer, the ethics of how we're using the data for research. They're looking to have a positive impact on society. So that was devastating to me. I was really determined throughout that entire time period that I wanted to regain control and cement the mission of the company, which is to help people access, understand, and benefit from the human genome. I realized the best way to cement that mission was to transition it into a nonprofit. As a nonprofit, it eliminates a lot of the worries for people. They have the right to their genetic information; they always have the right to delete their data if they want. And 23andMe is 100% focused on always empowering you, the individual, to know the best about your health information. Collectively, for the people who opt into research, we're fueling incredible discoveries in areas like GLP-1 research, breast cancer research, depression research. How we can use all this collective information for a greater good and really help all of us prevent disease. When I think of the pain that everyone has—I look at my sister who died of lung cancer—I would have loved an effective treatment, but what I really would love is to prevent it in the first place. So prevent diabetes, prevent heart disease. The more we can know about your risks, the more you have the opportunity to intervene early.

Yeah. So I've run 23andMe now for 20 years. There are all kinds of lessons I've learned. The thing that was the hardest for us is that when we went public, it's a totally different sport than being a private company. We also went public at a really complicated time with the pandemic. The team you need to manage complex public company problems is a very different team than when you're private. The advice I always give to people going public now is to really make sure they understand they need a management team with public market experience, a board that understands that experience and the nuances of challenges that can come up. The team is everything. So making sure you have the right team is key, because it always comes down to the CEO being in charge, but you can't do anything without the right team. That was one of the number one lessons. Each stage of the company is like children: you have different people involved with your kids at different stages; you need different people involved with your company at different times. So for me now as a nonprofit,

I find everything is like children.

It's like once you've gone through that process, you can recognize that this phase of life requires this kind of involvement. As running it now as a nonprofit, there are a lot of similarities to how 23andMe has been for the last 20 years. What's different now is that our responsibility—all 180 employees—is to the mission and to having an impact. When you're running a company, you're always thinking about how you make decisions: am I making decisions just to make money, or am I making decisions about what's going to be the impact? For instance, 23andMe never ran ads. We never said, 'Here's your type 2 diabetes risk, here's a bunch of products.' We might recruit you for a clinical trial, but there was a purity and a trust element: this genetic information is about you, and I want to be that honest broker about what's genuinely in your best interest. One of the challenges we've always had is there's a lot of snake oil out there. People ask me why I don't sell peptides or other things. I only do things that I feel are genuinely in the best interest of my customers and backed by science. I want my customers to know whatever we're telling them, they can always trust us. And so we've always done that, but now as a nonprofit, we get to lean even heavier into that mission: the number one thing is accelerating discoveries for you, the individual, and for the entire research community so we can prevent instances like my sister having lung cancer, or treat it.

This is exactly what I'm so excited about. When we started the company, this was the potential. I remember in the earliest days, I was excited about people having their genetic information, but also the idea that if you could create these massive data sets, you could understand everything. Every single person can relate to going to the doctor and asking, 'Why do I have this? How do I treat this better?' and the doctor says, 'I don't know.' So for me, I wanted to get those answers faster. Traditionally, if Pfizer or Harvard or NYU runs a study, they can only enroll people walking through their doors. Clinical trials still run little flyers where you tear off a phone number. That's wildly inefficient because you're not getting the best data set; it's small and takes a long time. If you're looking for people with lung cancer at University of Texas, you just have to wait. The beauty of what 23andMe did is leverage basic technology like social media and the internet. We can advertise and say, 'Have you ever had a heart attack? Have you ever had lung cancer? Join 23andMe.' We democratize research. Most people never participate in research in their lifetime, but they would; they're just never given the chance. We make research really easy. Anyone from any location who is a 23andMe customer—over 90% opt into research—can take survey questions. I might ask, 'What time do you wake up? Have you ever lived near a farm? How much soda do you drink? Have you been diagnosed with type 2 diabetes?' We get a variety of information broader than your medical record. When you go to the doctor, your medical record has whatever is best for billing; it's slightly inflated. When I ask questions, I get all kinds of environmental information you wouldn't get otherwise. That allows every person to participate. That's how we could do the GLP-1 study so quickly: we emailed customers who had taken a GLP-1 and asked them to answer a survey. We worked with outside experts on the right questions, and then we asked about weight loss, side effects, duration. That's how we made discoveries and put them out into the entire ecosystem. Everyone benefits and has access; it's not behind a paywall or limited to institutions. Our main thing is to advance science for everybody because too many lives are at stake. I don't want it behind a paywall, and I don't want to hold on to all this data. A for-profit pharma company has a fiduciary responsibility to keep information to maximize it. That's where I feel there's a whole world of opportunity to do things that aren't necessarily money-generating but are in the best interest of you. I'm excited about pharmacogenetics: understanding which medications are right for you. Not everyone responds the same way. Antidepressants, statins—we can see who is genetically going to respond and who is likely to have a side effect. Common cancer medications like 5-FU, you can see this too. All this should be implemented in healthcare, but it's not accepted because physicians aren't trained on it and it doesn't necessarily generate return on investment. But it's the right thing for patients.

Well, I think the reality is that governments and healthcare systems are in a direction largely focused on incentives. The incentives right now are on treating disease, not preventing. And when Susan was diagnosed, I remember she kept saying that no one had ever even mentioned lung cancer to her. It came out of nowhere. Lung cancer is the number one killer, more than breast, prostate, and colon cancer combined. So she was saying, 'How is this a crisis and no one's talking about it? No one's thinking about the right screening mechanism.' We spent a lot of time thinking about the right treatments for Susan, but she was really clear that we need to have an impact on early detection and prevention. Why are so many women—particularly never-smokers—getting lung cancer? It's a women's health issue, an environmental issue. We need to understand it. So the Susan Wojcicki Foundation is focused on the environmental causes, how to detect it, and how to get that information out to everybody.

It's an extraordinary opportunity. 23andMe has over 14 million people who have joined, 90% have consented for research. Those customers answer surveys, some connect Apple HealthKit for wearable data and medical records. It's an incredible data set. If you came to me with almost any disease area—rare disease, strokes, sickle cell, TTR amyloidosis—I already have customers with every single one. They have the genetics. I have almost 2.5 million people genetically high risk for Alzheimer's, 85,000 who have had a stroke. They've all consented for research. How do I accelerate it? One of the hardest things for researchers is finding people. 23andMe solves that. We're actively raising a $100 million campaign to support us over the next four years to make this accessible to all researchers, all academic and nonprofit research for a minimal fee, almost free. I want to accelerate research discoveries for everybody because the timeline for research is 5 to 7 to 10 years. In that time, so many lives could be saved if we could get a larger data set. If I can help every researcher answer their questions with our data, I think we could dramatically accelerate discoveries everywhere. That's where I want 23andMe as this nonprofit to be the foundation that accelerates discoveries for everybody.

Correct. If you look at the impact from companies like Google and Meta, we have so much data to understand people, but we don't understand the human body. That's the next frontier: collect information on each of us about what's happening in our bodies. That's how we'll fundamentally solve human health. But you have to engage each person. One thing I get excited about is that 23andMe has something no one else has: 'escapers.' These are people who are genetically high risk for a disease but never get it. They don't show up at the hospital, so no one ever tests them. There's always been a question: are there people who should have cystic fibrosis but don't? People genetically high risk for Alzheimer's but don't get it? We have that because we pull in everyone, not just the sick. So we have all these people with genetic risk factors who never get the disease. Those people are magical because they hold the key to prevention.

Oh my gosh. Okay, sounds good.

Look, the thing that motivates me and the legacy I love is my customers who write in and say, 'You saved my life. I found a sibling because of you. I found my identity because of you.'

Well, we're not part of any of that. In the earliest days, I remember people said, 'Anne, there's a lot of money in America's Most Wanted. Do you want to do crime stuff?' I said, 'Listen, 23andMe's mission is about helping people and research, nothing about crime.' So we're not consenting for it, we don't do it. We have a transparency report; when police reach out, we fight subpoenas. We've never actually had a subpoena come through. So we're not involved.

No, I mean everybody thinks about that person who has a risk factor, and then thank goodness they're okay. If you can replicate that, it's life-altering for so many.

Well, the number one issue that drives me crazy in healthcare today is that almost every doctor and healthcare system assumes the patient will never change. The patient can't understand this. They assume you're less competent, incompetent. It's antithetical to every other product. Nike says, 'You can do it. Just do it. We believe in you.' You go into the healthcare system and they say, 'Oh, you have all these diseases. You're never going to change. I'll see you later.' I almost died giving birth to my son because they didn't listen to me. The epidural wasn't working, I was in labor too long, I contracted sepsis and was in the ICU for a month. So I've experienced that. The number one thing I want to change is to start believing in people: that you're smart enough to get this information, that with the right tools you can understand and make changes, and with the right coaching and motivation we can change our behaviors. We are all entitled to a life where we have the opportunity to be healthy at 100. The foundation of that is knowing your genetic information and having a team of people who believe in you.