23andMe 2011 State of the Database Address

Database Snapshot:100,611 users genotyped76% have agreed to participate in research59% take surveys57% are male47% are sharing with other users12% have multiple ancestry45 is the average age100,409 posts in our community forums60,000 pairs of relatives among users (4th cousin or closer)
More than 100,000 people have turned to 23andMe to explore their DNA for insights into their health and ancestry.Linked by a shared curiosity about themselves and a willingness to participate in research, these individuals have created a powerful tool for making discoveries that could help many others. 23andMe’s unique combination of DNA technology, web-accessible tools and content, and social networking has empowered users, who, in turn, have helped us create a new paradigm for research.So far, more than three-fourths of 23andMe’s users have allowed our scientists to incorporate their genetic data, as well as their responses to online questionnaires, into our research. Nearly 60,000 of our users take online surveys, and those who take surveys fill out at least 10 on average. They’ve contributed millions of responses to thousands of survey questions. Hundreds of users have also taken the step of submitting research topics of their own for 23andMe to investigate.Clearly people want a voice in reshaping healthcare and they want to accelerate scientific discovery.Through the flow of survey responses and the continued growth of our database, we’ve broken new ground. Our team of 20 scientists –including statistical geneticists, survey specialists, bioinformaticists and a medical doctor – run more than 1,000 genome-wide association studies for hundreds of conditions on a regular basis.

In just about three years, we’ve discovered new genetic associations for common traits, found novel genetic links for childhood and adult infections, replicated more than 150 previously identified genetic associations for dozens of common diseases and medical conditions, and discovered several new genetic variants associated with Parkinson’s disease.Our Parkinson’s Research Community represents one of the largest Parkinson’s studies in the world. It’s a model we’ve used for our Sarcoma Research Community, which is now one of the largest group of patients with this rare disease. And we’re applying our research model in many other areas, including a recently-launched NIH-funded study into how genetics affects individual response to common medications.As more people join 23andMe, our collective understanding of human genetics grows. We are focusing on research where it is needed most. We are accelerating the pace at which our discoveries come back to those who contribute to it. We believe that a world in which individuals understand more about themselves is good. And we know that 100,000 is only the beginning.
  • Will the data that you have collected, both genetic and phenotypic, and the results of your analysis be distributed under an open source data access licence?

    Naturally, sensitive data should be appropriately aggregated and anonymised to protect privacy, however, given that such protection strategies exist, I don’t think privacy is a major barrier to data release.

    Given your “powerful tool for making discoveries that could help many others”, do you think there is an ethical argument to be made about keeping the underlying data secret and commercial?

    In the future, as with so many emerging technologies, we face a growing divide between the ‘have’s and the ‘have-not’s. Will you work to alleviate the ‘genomic divide’ by releasing data?


    • Hi Dan,

      We are definitely open to this idea and are considering the best options for broadening the impact of the data while ensuring participant privacy. We are also a very collaborative company and are currently working with a number of outside research groups to make discoveries. Individual privacy, however, is still the most important issue and whatever strategies we adopt will depend on the circumstances surrounding each specific research project.

  • Madelyn

    My husband and I are very interested in determining if individuals who have taken or are taking a statin, and possess one or 2 of identified SNPs in a gene your DNA profile assesses have an increased risk of neurodegenerative diseases. Given the data collected, the process should be straight forward and the information easily obtained. Is there a scientist with whom we could discuss this project?

  • Hi,
    I just recieved my results and posted on my log. I thought I would share this with you.
    As the head of a genomics lab I would like to find out more about research thrugh 23andME. I’ll get in touch via the website.