23andWho?
Sergey Brin—founder of Google, bearer of a genetic marker associated with a disposition towards Parkinson’s—recently announced that his wife’s consumer genotype business, 23andMe, will build an online community of people with Parkinson’s. For $25 (vs. the usual $399), a person with Parkinson’s can have a genetic profile done by 23andMe. The data in each profile will then be added to a huge pool of which 23andMe will be the custodian and which will be used to generate knowledge about Parkinson’s and genetics.
Partnering on this project are the MJ Fox Foundation and the Parkinson’s Institute and Clinical Center. Katie Hood, CEO of MJFF, writes on The Huffington Post:
“The sooner we establish a robust online community of people with the disease, the sooner we will be in a position to deploy the Web-based tools scientists are now working to develop ….”
Of course, apart from the research community Ms. Hood refers to, there is a Parkinson’s community online. We are on the email lists of organizations like the Michael J. Fox Foundation, as members of action and advocacy groups like the Parkinson’s Action Network, and as participants on vibrant, vocal listservs. (In fact, there was an attempt on a listserv several years ago to gather data in a systematic way to see if any patterns emerged. It was a small-scale, unscientific effort, but the idea was there.)
It might have been productive if the spearheaders of this idea had reached out to the Parkinson’s community and included more stakeholders in the development of their plan. They might have heard from people like me, who have donated blood to research studies for genetic analysis and would gladly do so again, but have reservations about consumer genomics and wonder exactly how business and science will interface in this venture. They might have understood the concern of some about the protection of personal information—concern born of watching as key words and indicators in our searches and emails call forth a profusion of commercial links.
I don’t mean to dismiss the Brins’ generosity, which is considerable, or malign their intentions. I have no doubt that the Parkinson’s community is ready and willing to participate in Web-based research. But talk to us, please. If this effort really is to be “participant-driven,” let us do some of the driving.
2 years ago