Google co-founder Sergey Brin has about a 50 percent chance of developing Parkinson's disease, the degenerative central nervous system disorder that impairs motor skills and speech.
The revelation comes through a touching profile by Thomas Goetz in Wired magazine, which shows how Brin has tried to "move the needle" of research for the disorder by contributing $50 million and talking to, well, everyone.
According to the article, Brin discovered that he carried a mutation of a gene called LRRK2, which sits on the 12th chromosome. The mutation increases the chance that the disease will emerge sometime in the 36-year-old's life, "between 30 and 75 percent."
The risk for the average American is one percent.
But Brin is not the average American, and he's used his clout as co-founder of one of the biggest tech companies in the world to, well, do good. (Google's motto: "Don't be evil.")
Helped by his own stature, as well as that of his wife, Anne Wojcicki, who founded genetics company 23andMe, he was able to nail down a definitive connection between his mother's experience with the disease and his predisposition toward it.
Brin went public with his personal news in September 2008, when he blogged for the first time about the disease.
I know early in my life something I am substantially predisposed to. I now have the opportunity to adjust my life to reduce those odds (e.g. there is evidence that exercise may be protective against Parkinson's). I also have the opportunity to perform and support research into this disease long before it may affect me. And, regardless of my own health it can help my family members as well as others.
According to the article, he's since been talking to lots of folks in pursuit of a data-driven way to accelerate progress toward a solution. Scientific progress isn't fast enough for the Silicon Valley king, and he wants to upend biomedical drug research.
To be sure, biomedicine, and pharmaceutical research in particular, is not the same as software or computer chips. It’s a much more complicated process, and Brin acknowledges as much: “I’m not an expert in biological research. I write a bunch of computer code and it crashes, no big deal. But if you create a drug and it kills people, that’s a different story.” Brin knows that his method will require follow-up research to get through the traditional hoops of drug discovery and approvals. But, he adds, “in my profession you really make progress based on how quick your development cycle is.”
Despite the criticism, Brin is moving forward. In cooperation with the Parkinson's Institute, Fox Foundation and 23andMe, Brin has proposed a new development cycle.
With a $4 million donation, Brin has funded 23andMe's online Parkinson's Disease Genetics Initiative, which involves 10,000 people already diagnosed with the disease who are willing to offer personal information in the collective hope for progress toward a cure.
Volunteers spit into a 23andMe test tube to have their DNA extracted and analyzed. That information is then matched up with surveys that extract hundreds of data points about the volunteers’ environmental exposures, their family history, disease progression, and treatment response. The questions range from the mundane (“Are you nearsighted?”)—to the perplexing (“Have you had trouble staying awake?”). It is, in short, an attempt to create the always-on data-gathering project that Brin believes could aid all medical research—and, potentially, himself.
In so many words, the aim is to create a massive database for the greater good. Currently, 23andMe's database has genetic information from 50,000 individuals. Increasing that can only help the results become more reliable.
Of course, such a database raises privacy concerns.
Would you offer your genetic information for such a cause? (Update: SmartPlanet science blogger Boonsri Dickinson.)
This post was originally published on Smartplanet.com