Institute For The Future

23AndMe's "Research Revolution"

A couple months ago, I noted that 23andMe initiated its first self-organized trial for Parkinson's Disease where the patients themselves have paid much of the cost of enrolling in trials and have invested time into filling out questionnaires and tracking symptoms. Last week, the company announced plans to expand those efforts to 10 additional conditions by offering a $99 DNA test kit to individuals who will participate in the company's research. As part of this process, they've launched the "research revolution" area of their site where individuals can pledge to participate in the research and vote on which diseases 23andMe's researchers should study first.In describing the effort, 23andMe's founder Linda Avey writes:

 

But not everyone can garner the resources to create their own company or foundation; it’s hard to know where to turn in trying to make a difference. This summer, 23andMe is launching the Research Revolution to empower more people to jumpstart genetic research into the diseases that affect them and the people they love. This new research model makes it possible for large groups of people to assemble themselves into large-scale genetic studies without having to raise millions of dollars in funding, and then wait years for things to get rolling.

 

It's an intriguing model, and one that I think will gain acceptance over time as genetic testing continues to become cheaper. But, as Daniel MacArthur notes, the big short-term challenge will be to recruit enough patients to actually derive statistically useful information--and at the present targets of 1,000 enrolled participants, there probably won't be enough participants and data to reach statistical significance.That said, their long-range model, as MacArthur suggests, is potentially far more disruptive. As he puts it, 23andMe:

 

[A]im to build stable, self-sustaining communities of potential research participants, that add new members over time and are available to add further trait data (for instance, to answer more detailed questions about disease progression) and also to engage in more sophisticated genetic tests (up to and including whole-genome sequencing, eventually).

 

If, as he suggests, 23andMe can effectively build stable communities that track data over time, they'll have an incredibly unique, and powerful tool to advance medical research.