Advertising Ethics & Personalized Genomics

What’s a personalized genetic blueprint worth? Yesterday the NY Times (and everyone else!) ran a story gushing about how a new-ish company called Complete Genomics is about to start offering to map an individual’s entire genome for the bargain-basement price of $5,000. Five grand isn’t pocket change for most of us, but being able to get a complete genetic blueprint for the price of a used car is pretty cool, given that the very first complete human genome ever was published just last year.

Less clear, of course, is just what you’ll get for that price — after all, a printout listing the 3 billion or so base-pairs (the fundamental units making up the DNA molecule) that make up my genome doesn’t exactly foretell my future or tell me how to live my life. The raw data has to be interpreted, and in many cases (since the function of various genes, and the relation between some genes & diseases) is unclear, the process of interpretation is itself fraught with danger.

So, how does a company responsibly advertise a product, the health benefits of which are so poorly understood even by experts?

At least some personalized genetics companies promise other kinds of benefits. One of the most prominent “personalized genetics” companies, 23andMe, has just issued this press release, announcing:

a world-wide effort to assemble the largest cohort of women whose lives have been impacted by breast cancer and to build an infrastructure, based on genetics, that will accelerate consumer-based research of the disease.

One of the most significant benefits offered by 23andMe’s breast cancer project is the opportunity to be part of a community of women sharing similar experiences. Well, that’s the hope. But of course unlike most social networks (such as Facebook and MySpace), 23andMe’s social network isn’t free (in fact it’s now available at the new, reduced price of $399). Stay tuned. Advertising the benefits — and making clear the distinction between medical benefits on one hand and psycho-social benefits, on the other — is going to pose ethical challenges for companies advertising personalized genetics over the coming years.

For comments from a different angle, see the posting over at the Research Ethics Blog.

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