No One Cares More About Your Health Than You: Part 2
PublishedJuly 8, 2021
Andrew Le, MD: Is science today more accessible to the average person? The whole world watched and waited as we developed the COVID-19 vaccines.
Anne Wojcicki: It’s a passion of mine to help everyone feel like they can understand science. COVID ushered in more understanding about basic science, but it’s going to be a long-term effort. Wearing a white coat and having to call someone “doctor” sets up a barrier. It takes time to change that and to teach people that this information is accessible and can be challenged.
As I said [in Part One], one of my inspirations for 23andMe was the HIV/AIDS movement—especially HIV drug development in the '90s. Many groups wanted to know what was happening. Some of them stormed the FDA.
It can't just be the healthcare world making all the decisions. People who have a medical condition must also help pioneer a path. No one cares more about your health than you. When there is partnership, outcomes improve.
Andrew: We're always thinking about how hard it is to digitally engage with people about their healthcare, particularly about sensitive topics. What has your team learned about asking sensitive questions in a way that creates response—even when there might not be an instantaneous payoff for the individual?
Clear data visualizations give users straightforward data about their genetic traits from the privacy of their own homes. 
Anne: There's no magic bullet, but we’ve found there is a nice aspect to asking questions online because there are no eyes staring at you. There's no judgment.
23andMe has worked hard to establish a brand that makes people believe we are doing something meaningful with the information they give us. I’ve learned that the most depressing aspect about medical research is that although so much data is collected, nothing is done with it. We build trust by saying we're going to be responsible custodians of your information and will try to do what's best for you.
Sometimes you build trust through your failures rather than your successes. A huge trust-building moment for 23andMe was receiving the FDA warning letter. It would have been easy to change our model at that point, but we didn't give up. We remained committed to believing in individuals’ ability to handle their genetic information and in the accuracy of our data. In healthcare, your doctor almost never says sorry, but we readily admit to our customers when we make mistakes. That's how we learn and build up trust.
We carry this concept through to our diversity, equity and inclusion (DEI) work. For example, last summer we didn’t have a single black person at a director level or above. The first thing I can do to build trust, especially within the African American community, is acknowledge where I am and say how I can improve. Since then we’ve hired L. Okey Onyejekwe Jr., MD & JD as our VP of Healthcare Operations and Medical Affairs, Melinda King as our Director of DEI, and we recently added two board members from underrepresented minorities. But, there’s still so much more to do.
We build trust by saying we're going to be responsible custodians of your information and will try to do what's best for you.
Andrew: This isn't even the CEO corner anymore. This is awesome! We published our own diversity, equity, inclusion and access (DEI&A) report to show where we are weak and what we're doing about it. It's something that we think about all the time. How do we do this in a way that's genuine and not performative? You said that less than five percent of your genetic database is from people of African descent. What steps are you taking to make a difference there?
According to research on human genetics, over three-fourths of those studied identify as white, leaving potentially dangerous gaps in data for non white individuals. .
Anne: It's hard to get people to join a movement if there's no representation. One of the biggest issues in healthcare is the lack of representation. There is very little diversity in drug discovery. I also realized how few black leaders there are in medical and scientific research.
I made a commitment that our next board members were going to be people of color and we’ve done that. We've also had an intentional push to widen our hiring funnel. There are incredible people out there but because of unconscious bias, we're looking in the wrong places. We are trying to change our culture of inclusion. It would feel inauthentic to hire for diversity without first building up trust within underrepresented communities.
Andrew: That makes sense. I love that you’re thinking about diversity from a foundational perspective, as opposed to an outcome perspective. You’re making a case to the FDA that people should receive their genetic information directly. Can you talk about your digital bedside manner when it comes to delivering potentially bad news?
My parents use 23andMe. My mom discovered she has the APOE4 mutation [the strongest risk factor gene for Alzheimer's disease]. It was a big family moment for us. How do you think through such a monumental responsibility to families?
My parents use 23andMe. My mom discovered she has the APOE4 mutation [the strongest risk factor gene for Alzheimer's disease]. It was a big family moment for us.
Anne: That's a very good question. When I worked in hospitals, I saw a lot of bad news delivered poorly. My goal was to create a standardized way of providing this information and online support. Based on the data we collected for the FDA and with Robert Green at Harvard who led the original APOE studies, we showed that most people can successfully handle this kind of information when it is presented in a way they can understand.
Specifically, it’s one of those moments that allows you to change someone’s behavior. Are they going to eat better? Are they going to stop smoking? Are they going to change how they're living or get involved in clinical studies?
One thing that aggravates me in healthcare is so much of this information is hard to get in the first place. People should have more choices. I don’t think many people realize that insurance companies make choices for you.
Andrew: I'm so glad that my mom found out about her risk because our whole family lives differently, plans vacations differently, now that we know that result.
Anne: So often in medicine, unless something can be done for the patient, they don't want the information. However, there are other important things in life besides getting treatment.
To your point, you might want to choose to spend vacations differently or spend your time in general differently. I met a person who's homozygous for APOE, and she decided to sell her company so she could focus on research and have a high-quality life with her young children.
Andrew: Genetic research is continuing to blossom. How does your team consume this ever-changing clinical landscape and think about developing new products?
Anne: Product prioritization is always challenging. There is so much we could theoretically put out to our customers. Right now, we are focused on polygenic risk scores. If you have a high polygenic risk score for a certain disease, you can consider ways to be proactive. In the short term, we're developing polygenic risk scores for common diseases so people can potentially change their behavior for a meaningful outcome.
Genetic variants in DNA represented by the letter 'V' can be shared among individuals, or can be specific to one person. 
Andrew: In an ideal world, how would polygenic risk scores play with something like primary care?
Anne: Let's say you're in your 30s and find out you're at high risk for heart disease or type two diabetes. There is a new world of virtual primary care that can help you think about behavior change. Providers can coach patients between annual physical exams. Part of my goal is to help transition primary care into proactive, preventive care.
Andrew: Do you think there's a role for genetics in how insurance is handled?
Anne: Yes. But I don't see a solution unless we transition to a single-payer system. The U.K. is launching polygenic risk scores to the National Health Service. It's going to be amazing. They will be able to look at higher-risk individuals and ask how they can help them be healthier. It makes sense financially to pay for long-term prevention for certain individuals.
U.S. insurance companies tend to use a two- to three-year timeframe. If you're 20 years old and genetically high-risk for heart disease, U.S. insurance companies aren’t going to put any effort into helping you because you're not going to have heart disease for many years. A direct-to-consumer model pays off because you care. Again, no one cares more about your health than you.
Andrew: I wholeheartedly agree. I think a lot about Netflix. They produce movies that no one else does. Why? Because their economic model is direct-to-consumer in a long-term membership model. What area of medicine do you think has the greatest promise for therapeutics coming from a collaboration of 23andMe and pharma?
Anne: 23andMe is kind of like Netflix. They develop shows because they have data to help them figure out what people want. At 23andMe, we also follow the data. When we have compelling genetic associations, we tend to pursue a program. The reality is that everything is genetic. There's potential to develop therapeutics in every single condition, but we are starting with cancer because the data was so compelling.
Consider Amazon’s model. They have so much data that they can predict who will order what and from where, so it's already shipped there. The same process can happen with disease. We want to know what's going to happen in a population so we can deliver care. That’s the ultimate goal: using data to create meaningful products that will make everyone healthier.
 Image courtesy of 23andMe. https://mediacenter.23andme.com/videos-and-images
 Data collected from https://www.cell.com/cell/fulltext/S0092-8674(19)30231-4#fig2
 Image courtesy of genome.gov. https://www.genome.gov/Health/Genomics-and-Medicine/Polygenic-risk-scores