Therapeutic Misconception, Personalized Genetics, & Breast Cancer Research
Two of the hottest tech-related topics in the news today are genome sequencing and social networks. This story brings the two together.
According to this press release, the controversial personalized genetics company, 23andMe wants to build what is essentially a social network of women united by their experiences (first- or second-hand) with breast cancer.
Summer Johnson over at the excellent “blog.bioethics.net” worries that 23andMe isn’t doing enough to avoid the ‘therapeutic misconception’ i.e., the misconception, common among participants in research, that the research they’re participating in will somehow help them (which is typically false) rather than simply advancing knowledge in a way that may help people like them in the future.
According to Johnson:
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.
The benefits of personalized genetics/genomics are certainly easily misunderstood. But it’s not clear there’s much risk of therapeutic misconception, here. Admittedly, the press release never states specifically that treatments are years or decades away, but it never implies they’re closer than that, either, and there’s an awful lot of very fair talk about community-building. In fact, although lots of studies promise the vague benefit of “helping others” and “being part of a community,” the way 23andMe is approaching breast cancer research actually does stand to benefit participants (though clearly not by curing their breast cancer). In particular, participation in an actual social network could help individuals who take part by allowing them a place and space to articulate their experience, and to take part in a social network with empathetic or sympathetic persons who share their experiences and who can provide not only relevant but meaningful support that may otherwise be lacking that in their lives.
Research Ethics Blog 
Actually, the question that I am left to ask is, what does it take to join this ‘community’ (besides being a survivor), which I am not sure is clearly delineated on the 23andme website, i.e. to join, must I pay for services?The data that could be collected from the clients sharing their experiences in relation to knowing their genetic makeup (to which perhaps only 23andme would be privy to) actually stands to have an extreme potential richness… I am wondering will it be treated casually?
Here’s a related story (on the value of online communities to people with specific diseases), from CNN:< HREF="http://www.cnn.com/2008/HEALTH/10/09/ep.health.web.sites/index.html" REL="nofollow">Patients find support, help via online networking<>
Found y’all via Womens Bioethics Blog, and have added you to the blogroll. This is great, as a Research Ethics Blog is desperately needed.Apropros this blog post, you may be interested in an entry I composed on the therapeutic misconception, which is a topic I work on:http://www.medhumanities.org/2007/09/medical-human-1.html–Daniel Goldberghttp://www.medhumanities.org