The quote above, taken from a Nature Comment published yesterday by John Wilbanks and Eric Topol, encapsulates my motivation for co-founding 23andMe a little over 10 years ago.
I believed then as I do now that if people want to be healthier, they must take more ownership and responsibility for their health. A key part to being an empowered health consumer is being in control of your health data, understanding it and using it to make the right decisions for you.
This is absolutely core to the soul and mission of 23andMe. The data is yours even though some may try to tell you it is not or they may make it challenging for you to get it. I have had numerous instances throughout my life where I have had to work hard to get my health data – and those challenges continue to exist today. My hope for 23andMe customers is that they not only learn about genetics but that they get a taste of what it’s like to be in control of important health information and that this inspires them to be more proactive with all their health data.
23andMe pioneered the idea of customers getting access to and owning their raw genetic data. 23andMe customers have always had the ability to access and download their raw genetic data and do with it as they please (Wilbanks and Topol mistakenly state that this data can only be shared with “certain listed institutions”).
We place no restrictions on whom a customer shares his or her data with. I would strongly encourage the thousands of individuals who are participating in federally funded research projects that involve genetics to request their data. To date, almost no federally funded studies enable individuals to get access to their data — notable examples include the Million Veteran Program and the half a million patients in the Kaiser Permanente Research Program on Genes, Environment, and Health.
Privacy and Security
To encourage responsible use of the raw data, 23andMe developed an API that empowers 23andMe customers to securely interact with applications developed by third parties that meet our criteria. We recently announced a ResearchKit module that allows researchers to seamlessly integrate genetic information into their app-based studies. We are also actively working on ways to facilitate easier sharing of 23andMe reports with medical professionals for those customers who wish to do so. The paper does raise the concerns about marketing around health care data in for profit companies. Wilbanks and Topol warn of a future in which companies use customers’ health data to “aggressively market health-related services to people.”
23andMe does not do that, though we do occasionally send marketing emails that customers can easily opt-out of. 23andMe does use health data – genotypic and self-reported phenotypic data – to direct research projects and questions to customers who opt in to research by signing our IRB-approved consent document. I believe that customers should have the opportunity to not just own their data but to connect with researchers and participate in studies that interest them.
23andMe actively engages with both academic and pharmaceutical partners in research. However we never sell or give individual level genetic or phenotypic information to any third party without explicit consent. There is tremendous potential for making novel research discoveries in a large crowd-sourced community. Wilbanks and Topol argue for the “transformative” potential if just 5 percent of the population donated their health data to science.
We’ve seen the power of this first hand at 23andMe. We have well over a million customers with more than 80 percent consenting to participate in research. The 23andMe research team and our collaborators have made discoveries in Parkinson’s, skin cancer, migraine, and many other areas of human health, publishing more than 50 papers – the majority in open access journals. We consider our consented customers, research partners and not “human subjects” – on average each contribute to more than 200 studies and are key in helping us make new discoveries.
I applaud Wilbanks and Topol for highlighting what’s at stake as technological advances enable the collection of huge amounts of health information. It is still immensely challenging to get access to and own most your health data and it is imperative that the collective health care system begin to enable individual data ownership. None of the “transformative” potential will be realized if individuals can not access and own their data in a manner as simple as owning an online bank account.
I am also glad for the authors’ recognition of the immense potential for citizen-fueled science as one of the key benefits of putting health data directly into the hands of the people. With more and more projects like the Precision Medicine Initiative following our lead and developing protocols that not only allow anyone, anywhere to volunteer for research, but also return data to those volunteers, I believe we really can realize the healthier future we are all working towards.