Sergey Brin, the billionaire co-founder of internet giant Google, is pledging millions of dollars to a new genetic study of Parkinson’s disease, after discovering last year that he had a 50-50 chance of developing the disease.
Brin found out about his elevated risk of developing Parkinson’s last September, after he gave a sample of DNA to 23andMe, a genetic disease screening company that is co-owned and co-managed by his wife, Anne Wojcick, according to a report in the New York Times. Brin’s mother, Eugenia Brin, already has the disease.
Sergey Brin and his business partner Larry Page, now billionaires in their mid-thirties, were in their twenties when they set up the Google search engine.
Brin told the press that he while he believes he has a 50-50 chance of developing Parkinson’s in 20 or 25 years, he also believes there is a 50-50 chance of medicine catching up and being able to deal with it, reported the Mail Online.
The genome-wide association study will analyze the DNA of 10,000 people with Parkinson’s disease to find out which genetic and lifestyle factors are behind the disease.
Study participants will fill in online questionnaires about their lifestyles and disease symptoms. 23andMe will ask customers whose DNA they have already scanned and who don’t have Parkinson’s if they would like to be controls in the study, which will compare their DNA to that of the participants with the disease in 600,000 places along the genome.
According to the New York Times, Brin declined to say how much the study was going to cost, except that his contribution will mean participants who want to take part will only have to pay 25 dollars instead of the customary 399 dollar fee for a DNA scan.
Wojcicki said that they are charging a nominal fee (as opposed to allowing people to join without paying) to make sure participants are committed to the trial.
She and other executives at 23andMe told the press that this was a “huge opportunity for us if we can make research more efficient”, in terms of doing similar studies for other diseases.
Another way that 23andMe could make money from such projects would be as a supplier to drug companies who would pay them to mine their database. The company said it would never sell a person’s individual DNA, even when they do their own research the names are stripped from the data, they told the New York Times.
Recruiting participants will be a challenge and for this part of the project the company will get help from the nonprofit Parkinson’s Institute and Clinical Center and the Michael J Fox Foundation for Parkinson’s Research.
Another challenge will be the quality of data, since the Parkinson’s symptoms will be reported by the participants and not come out of physical exams and interviews by medical professionals. While genome-wide association studies on such a large scale are not new, this will the first where the participants are “self-organized” and administered via the internet.
Writing in a blog recently, Wojcicki and her 23andMe co-founder Linda Avey, said the Parkinson’s study is the next phase of the company’s goal to “provide a wholly new research platform that enables our online community to voluntarily participate in unprecedented genetic studies”.
They wrote that this was a new approach to doing research because it uses the web to bring people together from all over the world who want to share information about their health and combine that with their genetic profile, and also get feedback on the results.
Most common diseases have complex genetic and environmental components, wrote Wojcicki and Avey, and one of the big challenges of genome-wide association studies is to analyze to a high level of detail all the pieces of information necessary to characterize the disease and how it progresses. That is why such large numbers of participants are needed to give the researchers the right amount of statistical power.
Using this new approach, of recruiting individuals directly through the internet, may overcome some of the problems that arise in consortia-based projects, where exisiting research projects come together, each with their own agenda and problems like funding, control, and patent rights.
It would seem that the news here is not just about a rich man giving money to fund much needed research into a common and debilitating disease, but also about a social revolution in how research is done and who owns it: with the focus on “the people rather than the process”, as Wojcicki and Avey described it.
Who knows, perhaps the results will be shared and discussed on Facebook and YouTube?
Sources: New York Times, Mail Online, 23andMe blog “The Spitoon”.
Written by: Catharine Paddock, PhD