The Direct to Consumer Disconnect: Why the genomics community is going to have trouble talking to patients and doctors alike

What ELSI is new (article)This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Matthew Herper, Forbes.

We can sequence DNA cheaper and faster, and even deal with all the data.

But if genomics is really going to impact medicine, we’re going to have to start bridging the gap between the companies and scientists doing this early work and the traditional medical establishment. The genoscenti like to talk about how everyone should have access to his own DNA. Your genes are a part of you, they say. How could they belong to anyone else?

But that isn’t how medicine has worked. I need a doctor as a go-between to find out my LDL or CRP or even what copy of the BRCA gene I have.

That’s not to say that things shouldn’t change. But bridging this yawning gap is going to be the big social challenge of genomics.

23andMe’s big contribution has been to start this conversation, but we’re still a long way from figuring out how genomics will fit into medical culture, no less into the regulatory framework. And how and whether innovation gets paid for will depend very much on those cultural and regulatory structures.

It’s easy to say medicine and government have to change. But the reality is that they will do so only slowly. Right now, the big challenge for people in genomics may be to start thinking about how to silently wind their way into the existing medical culture.