DTC Genomic Research: Revolution or Minor Uprising?

researchThis is the fourth of four related posts analyzing 23andMe’s decision to separate its health and ancestry DTC genetic testing services. For more please see 23andMe’s New Game Plan: What it Means for the Company and for DTC Genetic Testing, A Fundamental Right to Genetic Information (Now More Expensive Than Before) and The Open Secret of DTC Medical Genetic Testing.

In sifting through all of the discussion surrounding 23andMe’s newly separated health and genealogy services I noticed one other interesting piece of information by omission: the $99 Research Edition appears to have recently disappeared from 23andMe’s product line.

In July, 23andMe announced a “new research model [that] 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.” Termed the Research Revolution, the model was simple:

  • Purchase 23andMe’s service. In addition to its standard $399 service, 23andMe also offered a $99 Research Edition, a stripped down version of 23andMe’s full service, which provided customers with limited information about variants associated with genetic diseases and other traits, but left out reports on carrier status, drug response and genetic ancestry and did not include access to raw data.
  • Pledge Support for a Disease. Both new and existing customers had the opportunity to determine the disease(s) most worthy of study by pledging their support to one of 10 diseases.
  • Wait for Critical Mass. In return for its customers’ support, 23andMe pledged to “. . . do research on any disease that enrolls enough patients to ensure a productive study. The research will be conducted by 23andMe scientists, working with outside researchers who have expertise in the particular topics being studied.” When the project was announced, 1,000 patients was determined to be the threshold for “enough patients to ensure a productive study.”

But a funny thing happened on the way to the Research Revolution: there weren’t enough revolutionaries. Periodic checks of 23andMe’s progress page over the summer and early fall made it clear that reaching 1,000 patients for any of the 10 listed diseases was going to take considerably longer than expected. Or a change in the rules of engagement.

Re-visiting the Research Revolution progress page over the weekend I was surprised to find the following announcement:

The first phase of Research Revolution concluded on September 30th, 2009. We have a clear winner — Migraines, with more than 200 patients and 500 supporters. To follow through on the commitment to start a research study, our science team has developed a survey on headaches that is now available to all 23andMe users. We will analyze the survey response data to hunt for clues to the genetic causes of migraines.

For a company known for its creative marketing, the completion of the first phase of the Research Revolution was conducted without any noticeable publicity. Not even 23andMe’s corporate blog, the Spittoon, made mention of Migraines’ victory. The company did announce a new migraine headache survey in mid-October but, oddly, there was no reference to the Research Revolution.

Even more intriguing than Migraines’ silent victory in the Research Revolution race is 23andMe’s decision to move the finish line. As this screenshot posted by TechCrunch shows, 1,000 patients (not just supporters) was the original threshold for enabling a research study for a complex trait such as migraines. But that was July. By September, with Migraines not even one quarter of the way to the finish line, a “victor” was declared.

As with 23andMe’s restructuring and re-pricing of its services, the changes to the Research Revolution model raise questions about the company’s evolving strategy. Did 23andMe overestimate the level of interest for customer-driven research? Is its failure to approach 1,000 supporters – not just patients – for any of the 10 listed conditions indicative of more widespread difficulties attracting paying customers? And, most importantly, are 200 migraine patients and 500 supporters enough to conduct meaningful genetic research, let alone qualify as a Research Revolution?

There’s no question that 23andMe continues to pursue innovative approaches to participatory genetics research. But at this point it remains unclear whether sufficient numbers of paying customers are willing to come along for the ride.