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.