a his & hers weblog of worlds apart
I hope this science post doesn’t scare off the flood of marketers who were directed here after Seth Godin linked to Sean’s idea last week. Our goal is to make this interesting for a variety audiences.
While browsing the “Design and the Elastic Mind” exhibit at the MOMA a couple of months ago I was shocked by the number of genetics-related installations. At the time I was completing my master’s degree and felt so immersed in the microcosm of clinical genetics that I had temporarily forgotten about the mainstream fascination with the sexy and futuristic aspects of the subject.
The state of California’s recent cease-and-desist order directed at several direct-to-consumer genetic testing companies has served to highlight the tension between medical and recreational genetics. I have been surprised by the strong adverse reaction that has been generated. In a recent post, blogger Daniel McArthur makes a good case for recreational genetics, and calls out the medical community for representing the old-school camp of the current genetic testing regulation “turf war.” I also thought this article on Wired’s website provided a strong argument that I had not considered previously:
“The assumption that there must be a layer of “professional help” is exactly what the new age of medicine bodes — the automation of expertise, the liberation of knowledge and the democratization of the tools to interpret and put to use fundamental information about who we are as people. Not as patients, but as individuals. This is not a dark art, province of the select few, as many physicians would have it. This is data. This is who I am. Frankly, it’s insulting and a curtailment of my rights to put a gatekeeper between me and my DNA.”
Here are some of my thoughts on the issue:
1. A level of oversight and transparency regarding the laboratory aspects of the testing is essential. If I am going to spend $1000+ on this product I want to know that, at the very least, there is a process in place to avoid sample mix-ups and that the lab techniques being used are up-to-date and credible.
2. There should be a distinction between recreational and medical genetics. There is no harm in learning that you have a genotype that makes your pee smell after eating asparagus (a much cheaper option: eat some asparagus, wait a couple hours, and pee). And you certainly don’t need a physician to interpret that information for you.
On the other hand, learning that you are predisposed to certain diseases requires a little more foresight and follow-through. For example, if a test reveals that you have an increased risk for developing breast cancer, should you go for a mammogram earlier than you would if you were at the general population risk? If so, how much earlier? Would your family physician be liable should he/she fail to refer you for a mammogram and you develop breast cancer? There needs to be some consensus developed for these kinds of issues, and this requires oversight.
(A potential problem with this approach arises when, 5 years from now, researchers discover that that same genotype for asparagus-pee predisposes you to developing early onset Alzheimer’s disease.)
3. Genetics professionals who fail to recognize the fun, cool and recreational aspects of this field risk alienating themselves, and will miss out on the opportunity to increase their visibility and further their own profession.