Lying to patients about genetic tests is wrong

1 minute read

Bonnie Rochman, in the Health and Family section of Time, picks up the story of the ethics of reporting incidental genetic results to patients: “What Your Doctor Isnt Telling You About Your DNA”.

The test results were crystal clear, and still the doctors didnt know what to do. A sick baby whose genome was analyzed at the Childrens Hospital of Philadelphia turned out to possess a genetic mutation that indicated dementia would likely take root around age 40. But that lab result was completely unrelated to the reason the babys DNA was being tested, leaving the doctors to debate: Should they share the bad news?

This article is one of a recently emerging class, in which reporters focus on the worst possible genetic outcomes as a way to sharpen the mushy ethics of DNA testing.

The article includes a quote from Misha Angrist, with which I agree:

Parents should be given access to this information thats derived from their bodies and their childrens bodies. This information is for everyone. Its scary because we have chosen to make it scary. We exacerbate it by treating it like the bogeyman.

What I keep noticing in these stories is that ethicists and geneticists constantly react against the supposed argument that “genetics is destiny”. Yet none of the articles present any evidence that anyone – not geneticists, not doctors, not purveyors of genetic tests – actually tells any patients or potential clients that genetics is destiny. This argument is a strawman: Obviously extreme, nobody agrees with it.

I pointed to another similar article from NPR earlier this month, to which anthropologist Holly Dunsworth had written a response (“Fearfully genetic”). I am coming to believe that journalists explaining the strawman “genetics is destiny” argument is the main reason why anybody knows about the “genetics is destiny” argument.

What I find interesting, reflecting on Dunsworth’s point, is that journalists are more effective at spreading the “genetics is destiny” strawman than are fiction writers. When a journalist wants to include the movie GATTACA in an article about genetics, for example, she must devote a large chunk of text to do it, because (surprise!) a 1997 Ethan Hawke film just doesn’t register anymore for most people.