Besides Paternalistic Bioethicists and Doctors, Who's Afraid of Their Genomes? Nobody Much
Over at Slate, Virginia Hughes has a nice article dealing with the hysteria over disclosing genetic information to patients and parents. She basically points out that there is precious little evidence that patients have much difficulty understanding the uncertainties and risks associated with genomic information. It's time to stop treating genetic information as though it is somehow especially toxic—it's just more information for a person to take into account when making various life and medical decisions.
Hughes cites the horrific case in which paternalistic physicians withheld genetic information from parents about the risk of early onset dementia in one of their children. As Hughes writes:
Though I'm sure the researchers meant well, their implicit message—that a nonexpert couldn't possibly understand the concept of an uncertain risk and would therefore be harmed by the knowledge—is not only patronizing but probably false.
Yes, the message of timorous and condescending bioethicists and physicians is, for the most part, false. Hughes cites her own experience after taking a genotype screening test from 23andMe in which she discovered that she had some genetic variants that suggested an increased risk for melanoma and heart disease. She described her immediate reaction as "panic," but she has evidently, and quite properly, gotten over it.
And she is far from alone in getting over her worries about genomic information. Hughes cites a recent New England Journal of Medicine study of subjects tested for genetic variants that significantly increase their risk of Alzheimer's disease that found that the results did not increase their levels of anxiety. In my 2011 column, "Bioethicists Can't Handle the Truth," I reported the results of that same study and many others that showed that patients and subjects are not harmed by having access to their genetic test results.
In fact, I am so unconcerned about genetic information that I have posted the results of my genotype screening tests online at SNPedia for anyone to view. See also my January 2011 Reason feature article, "I'll Show You My Genome. Will You Show Me Yours."
It is way past time for 25 or so states that have restricted the right of citizens to obtain their genetic information from direct-to-consumer companies to lift their bans.
The whole Slate article is well worth your attention.