23andMe Builds Online Sarcoma Research Community

Here's an interesting development. 23andMe, the online, consumer-oriented genomic testing site, is developing a sarcoma research community (see: 23andMe Achieves Milestone in Building Sarcoma Research Community). This strikes me a very novel idea that may serve as a forerunner to similar online projects. Below is an excerpt from the article explaining the concept in more detail:

23andMe’s sarcoma research efforts are well underway with collection of both phenotypic and genetic data from 500 individuals diagnosed with sarcoma already completed. The company is half way towards its goal of building a sarcoma research community of more than 1,000 individuals.... Sarcomas are a rare group of cancers that arise in connective tissues ...or in bone. It is estimated that there are approximately 13,000 cases of Sarcoma seen annually in the United States....The small number of cases seen, the diversity in the biology of each type of sarcoma, and other variables make identifying and understanding causes of Sarcomas particularly difficult. 23andMe’s Sarcoma research efforts first began in April 2010, inviting current and former sarcoma patients to participate by being genotyped and completing surveys about their disease and treatment response through the 23andMe web-based research platform, under approval from an Institutional Review Board (IRB)....As 23andMe collects information regarding these individuals’ experience, environment and response to different therapies, it is anticipated that 23andMe will be able to combine this information with genetic data to find patterns that will help researchers better understand the biology of sarcoma and the impact of various treatments. “We have already enrolled more than 500 individuals diagnosed with Sarcoma, passing the 50-percent milestone in our goal of building a sarcoma community of at least 1,000 individuals. Through our research platform, we are gathering valuable information about sarcoma and response to treatment from these individuals,” explained Amy Kiefer, 23andMe, Survey Research Manager, PhD.

I have covered 23andMe in previous blog notes (see: FDA Cracks Down on Consumer-Oriented Genetic Testing Web Sites; Web-Based Genomic Testing Sites Fail to Attract Large Paying Audience; Bioethicists Discuss Risks of Sharing Genetic Information on the Web). In my view, this new project, the development of a "sarcoma research platform," is very clever. First of all, it counters the claim of critics and the FDA that genomic web sites can be frivolous and risky. It also helps to promote the concept of consumer genetic testing to interested consumers not necessarily included in the sarcoma group. The company has taken actions to underscore the seriousness of this project by providing the [necessary] institutional review board (IRB) for research oversight as well as a panel of well-regarded scientists to act as an advisory body for the project (see: DSMB Halts Merck's Anti-Clotting Drug Study; Details about Such Organizations).

The key question is the following: is there a place for serious research among web-based genetic testing sites? I personally would say probably yes but I want to see what happens with this early effort.

Comments

[Lena Chow]

Bruce, you are exactly right in saying that projects like this helps 23andMe move away from the "frivolous and risky" image. I got that sense from Anne Wojcicki's talk at the PMWC 2011. As you said, time will tell.