While there is a case to be made for people to have greater access to their own genomic information, genetic counselor Laura Hercher from Sarah Lawrence College says that some people, though, need a guiding hand. She details her point of view at David Dobbs' Neuron Culture blog where, last week, he argued for more openness.
Hercher notes that the points made by Dobbs and others "are smart, well-written, ethically unassailable to a point — but at the same time contextualized to a very distinct set of circumstances, which can be frustrating to genetic counselors who work in settings where the scientifically literate, information-seeking consumer with time on his hands and an interest in genomics is not — safe to say — the average patient."
For people who don't have such a background and have turned to genetic testing to figure out what's wrong with them, they may need help understanding what their risk is, Hercher writes.
"I agree that it makes no sense to put up obstacles for inquisitive and motivated individuals who wish to query their genome for information, however laced with uncertainty or peril," she adds. "But forgive us if our first thoughts are often about how to help (yes, and to protect) the patients we see, in the medical setting. Science literacy is rare."