Thursday this week (April 16th), I attended a public meeting in Oxford hosted by Prof Peter Donnelly, Director of Wellcome Trust Centre for Human Genetics. He had invited 23andMe’s CEO Anne Wojcicki for a talk about personal genomics. The “town hall” style meeting took place at the Sheldonian Theatre, a historic grade 1 listed building in Oxford. The event was attended by 300+ people.
After an introduction from Peter Donnelly, Anne Wojcicki gave a brief talk that started with the question: “Who is in charge of your health?”, and she went on to tell the Wall Street story of why she got into personal genomics. The question of who owns your health data has been a concern of hers since her Wall Street days, she explained. If you’ve followed the 23andMe debate and seen some of the videos floating around on the web of Anne giving talks, you will also know that she repeatedly proclaims: “You own your own data”. But what does that mean when 23andMe’s terms of service state:
‘by providing any sample, having your Genetic Information processed, accessing your Genetic Information, or providing Self-Reported Information, you acquire no rights in any research or commercial products that may be developed by 23andMe or its collaborating partners’
and when its privacy statement says:
‘If you do not give consent for your Genetic and Self-Reported Information to be used in 23andWe Research or your individual-level Genetic and Self-Reported Information to be used in the Research Portal, we may still use your Genetic and/or Self-Reported Information for R&D purposes as described above, which may include disclosure of Aggregated Genetic and Self-Reported Information to third-party non-profit and/or commercial research partners who will not publish that information in a peer-reviewed scientific journal’.
The company’s mission statement was also put on a slide: “To help people access, understand and benefit from the human genome”. 23andMe offers genetic testing ‘direct-to-consumer’ which is their version of access; they educate consumers as well as physicians about genetics to make them understand; and they promise to make more general information about diet and exercise (typical lifestyle advice) more meaningful with genetics.
Anne also touched on 23andMe’s vision of making breakthroughs in medicine with their version of genetics research, and its newly launched ‘23andMe Therapeutics’ is the latest attempt at doing that. She explained that they want to use “that good world energy” to do research that will produce “really meaningful insights” – insights useful for drug discovery.
Anne’s talk was followed by questions from Peter Donnelly who started off by asking what 23andMe is doing to educate their customers about genetics. He also asked about the FDA (Food and Drug Administration) that in November 2013 had asked 23andMe to stop returning disease risk reports as part of their “Personal Genome Service”. 23andMe is now working with the FDA to get their tests authorised. In regards to their re-launch into the UK market (in Dec. 2014), the company have had their “Personal Genome Service” CE marked, which means that the product meets the necessary requirements of the European Commission directives. “We’ve learned from the past”, Anne said. “We’ve talked to the regulators”. The topic of 23andMe’s collaborations with pharmaceutical companies also came up. Earlier this year, 23andMe announced that they will be collaborating with the companies Genentech and Pfizer. “We might not like all what they do but we have to work with them”. “Drugs don’t appear on their own”, Anne said. And “we try really hard to be transparent”. 23andMe also wants to collaborate with other groups such as NICE (National Institute of Health and Care Excellence) in the UK. “I am a fan of NICE”, Anne said. She talked about how to identify which drugs work on which population. “How can we make the job of NICE easier?”, she added. The goal would be “true population-personalised health”.
From the audience, there were a few questions about the future of 23andMe, for example, whether the company would move into wearable technology. “At some point”, Anne said, wearable technology might be something to consider. She mentioned that it might help collect the necessary phenotypic data, as would GPS technologies and mobile phones. But she also said that at the moment, the challenge is that “there is so much data”. “How about in 30 years time?”, another member from the audience asked. In addition of “fashionable wearables”, it could include other “interesting ways of measuring what is going on in your body”, Anne responded.
Another question from the audience was about the volume of data that the customer gets back, here referring to the “raw” data, and how you can download your “raw” data file and run it through third-party tools such as Promethease (from SNPedia). Doing so, you would get additional interpretations of your data. “Are you isolating people with all the data?”. “You might have specific questions so I won’t limit your raw data”, Anne responded, but she also acknowledged that there can be too much data.
The conversation turned towards where to get help in understanding the test results. 23andMe has online material for its customers and they have also started to work with physicians to educate them more about genetics. Anne suggested that much of the help would be online, given that, in her words, “one to one counselling with the GP is changing”.
Anne Wojcicki and her team is in the UK for ‘The Personalised Medicine World Conference’ that is held at Oxford University Museum of Natural History from the April 15th to April 17th.