I’ve been re-reading Misha Angrist’s book Here Is A Human Being: At The Dawn Of Personal Genomics (please, please go read it if you haven’t) as I dig into the ways that our genomic data can be correlated to our clinical data. And it resonates deeply for me, especially after an experience I had last week.

I was at a conference, one held under the Chatham House Rule, so I won’t go into details on what other people said. But we were on the topic of how innovation might bring down health care costs. We got into a very abstract discussion of personal, direct-to-consumer testing for genomics, but it was so high level as to be worthless.

So I jumped in with both feet in my mouth, and told everyone I had a marker for prostate cancer that increases my odds, that I’d found it via 23andme, and that I was gathering information about whether or not to start getting a PSA testearlier than the normal age.

I got savaged by the doctors in the room. My initial reaction was “how dare you be paternal to me - I’m EMPOWERED!” and all that.

But once we got past the emotional reaction, it hit me that the doctors were advising me that getting into the medical system would be more likely to make me sicker than staying out of it: I get a false positive on a PSA test, I get a biopsy, I get a complication, I get a radical prostate removal order, and my cancer might well have been non-threatening in the first place. Pretty far from paternal. Downright scary about the power of the reimbursement workflow that doctors operate under.

Which brings me back to Misha. In his book, he quotes Amy McGuire  (see representative toll access publication on consent) as defining the idea of consent in the modern age of primitive personal genomics as a process of consenting to uncertainty. We don’t know what will happen if we sequence ourselves, what decisions are best, what research is enabled, what harms we create. We’re uncertain.

But that’s not a reason to bail. We need to get comfortable with consenting to uncertainty. Because the existing alternative - that workflow I mentioned above - sucks a lot more than being uncertain.