The case against paternalism in genetics is a cause célèbre among many scientists and science writers. The argument generally paints a picture of the medical professional as some sort of hybrid nanny-thug, protecting consenting adults from viewing their own genomes as though they were small children begging to play with knives, and at the same time fighting a bare-knuckle brawl with DTC companies to defend their turf as the only legitimate explicators of medical significance (because fortunes ride on the right to explain complex inheritance patterns and probability to the worried well. Please.).
The genome is not such a scary place and we have a right to our own genetic information. This case is made by many, including Virginia Hughes at Slate and Razib Khan at Discover and Daniel MacArthur at Wired. These arguments 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.
View the original article here: The Case for Selective Paternalism in Genetic Testing
