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Posted on October 3, 2008 at 5:36 AM

On Thursday, 23andMe announced their latest initiative aimed at bringing together the largest cohort of women with breast cancer “to build an infrastructure, based on genetics, that will accelerate consumer-based research of the disease.”

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The women who opt for 23andMe’s genetic testing services can opt-in for other kinds of surveys and other kinds of information gathering studies as well as the opportunity to be part of a growing community of women touched by breast cancer.

The ultimate goal, says the company, is to some day have personalized treatments. What the company doesn’t say to these women, though, is that this reality is certainly years if not decades away. The real benefits of this “research arm” of 23andMe is most certainly the “community” that this group provides–and these benefits can be quite real. The sense that there is a whole world of women out there going through what these women are, that can share information and experience, is a real benefit of this research–but telling these women that participation in this RESEARCH, not treatment, is nothing more than that.

Providing information to 23andMe will certainly help women in the future be cured and maybe even someday prevent breast cancer. Participants in this research are just as likely to be misled about this as any other kind of population genetics research of this kind. But 23andMe with all its press and with its purported goal to be the largest cohort study in the world should also strive to get the ethics right.

Summer Johnson, PhD

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