Participant-driven Genomic Research: About the 23andMe Parkinson's Disease Community

Many people have seen the announcement this week that Sergey Brin is subsidizing 23andMe's development of a Parkinson's disease community. Our Foundation, along with The Parkinson's Institute and Clinical Center, is assisting in this effort by distributing information about the community to our constituents who have Parkinson's disease.

When the community was launched on March 12, some invitees greeted the news with excitement, and others had questions and concerns. Two of my colleagues were at a Parkinson's Institute-sponsored patient symposium that day, where 23andMe was present to enroll interested individuals. My colleagues remarked to me later about how enthusiastically the effort was received -- scores of patients signed up, excited to be part of exploring a whole new way of supporting research. At the same time, we've received a few calls and emails from people concerned about privacy and the fact that this effort is being undertaken not by a nonprofit entity but by a company. These responses are valid, and we anticipated them as we planned for the launch.

For those who are interested, 23andMe and MJFF have information on our sites describing why we're participating in this effort. At the end of the day, it's about exploring the possibility of gathering information in a new way, powered by people with PD who are interested in driving the effort. At MJFF, our view is simple -- the Internet has improved the way we do virtually everything in our lives, so why should we not explore whether it can improve the way we do research, in the hopes of speeding discovery and therapeutic development? We also believe that it is up to every individual with Parkinson's to join or not join. The choice should be theirs to make.

I saw an interesting post, The Future of Participant-driven Genomic Research, over at Daniel MacArthur's Genetic Future blog yesterday. He writes thoughtfully about the issues around this effort -- including the challenges of learning how to collect scientifically valid data using the Internet, as well as the suspicion with which many academic researchers regard the consumer genomics industry. We all acknowledge these are early days for this sort of project, but also believe the potential is too great not to give it a shot.

On a side note, it makes sense to address questions I've seen about whether there are some inappropriate things going on in how this project is funded. Mr. Brin made a grant directly to 23andMe to enable people with PD to access the community at the discounted rate. In 2008, we funded a separate collaboration in which 23andMe and The Parkinson's Institute are working together to develop validated Web surveys for information gathering in online communities like this. We are not receiving money from Mr. Brin for the 2008 project or to develop this 23andMe PD community. We are, however, excited to serve as a conduit to people with PD in an effort to aid 23andMe in building the community to 10,000 as rapidly as possible. 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 -- and to truly understand the nature of the opportunity that the Internet presents to change how research gets done.

Comments

[cochrankat]

There already IS a Parkinson's community online. We're hiding in plain sight on the email lists of organizations like the MJ 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 systematically to see what patterns emerged—a small-scale, unscientific effort, but the idea was there.)

It would have been nice, and productive, if Mr. Brin and MJFF had reached out and included the large, visible, accessible Parkinson’s community in developing this idea. They might have heard from people like me, who donated blood for genetic analysis to scientific studies and would gladly do so again, but do not want the product 23andMe is selling, even at the nominal price of $25. They might have seen that some of us would want to know why, in order to contribute to Parkinson’s research, we should have to become a client of a consumer genomics business. And they might have understood the depth of our concern about how our personal information would be protected, given our experience watching key words and indicators in our Google searches and emails call forth a profusion of commercial links.

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.