Warts and all

Well, this is the thing. Correct me if I’m wrong, my board-certified brothers and sisters, but my sense is that for most highly heritable conditions there are few meaningful treatments. Even if that’s no longer the case for Alzheimer’s (and I’m no neurologist, but I have serious doubts), I don’t think anyone would dispute the broader notion that we’re generally much better at diagnosing and characterizing diseases than we are at treating them. One hopes that that equation will continue to change as it has for, say, HIV (at least in the developed world), albeit on a much faster trajectory and without the same terrible cost in human lives and human suffering.

Until then, we clearly have the technology to blind ourselves to the parts of our genomes we don’t want to know about. My questions are more about the source of that reticence and whether it will last: how much grim self-knowledge can we live with and will the ready availability of genomic information alone raise the threshold of what we can tolerate? “I got sequenced because I could. And oh yeah, by the way, it turns out I am at 100-fold increased risk for Fatal, Incurable Disease X.”

And if we’re willing to find out for ourselves, are we willing to share it with others? For those of us signing up to be public genomes, even though we’ve been given the option to redact whatever we want, have we somehow signaled an implicit willingness to let it all hang out, no matter how ominous the data?

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