"No more complicated than setting up an Orange Julius franchise"

1 minute read

That quote is from Misha Angrist, about the coming genetic interpretation industry. It’s part of an essay by Virginia Hughes, in Slate: “Its Time To Stop Obsessing About the Dangers of Genetic Information”. The essay will be worth discussion in courses that focus on human genetics. It ties together several claims: (1) widespread whole-genome testing is inevitable and nearly at hand, (2) social science research shows that people don’t have increased anxiety or other negative reactions when they learn about health risks from genetics, and (3) medical professionals are not prepared for this near-future.

I don’t endorse all the conclusions but Hughes expresses many aspects of the story clearly. For example, this passage on “informed consent” as applied to whole genomes:

The first problem boils down to the concept of informed consent, which usually means page after page of consent forms outlining the rights of a patient or research volunteer. (Whenever I talk to researchers about informed consent, they invariably compare it to the iTunes user agreement, where everybody checks the little box without reading the text.) Genome sequencing is so new that informed consent doesnt always happen, resulting in doctors ordering tests without asking people ahead of time about what to do with the results.
Asking people what they want to know is tricky because you dont know what will be relevant before you look at the data, notes Amy McGuire, director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Its impossible at the front end to go through every possible piece of information theyd get back and ask them how theyd feel about that.

Again, I’ve discussed these issues with many geneticists and I am continually surprised at how far behind most of them are in understanding what people are already learning about their own genetics.