That is the big question being considered in this long read about the direct-to-consumer genetics firm 23andme and one mother’s struggle to make sense of (and peace with) a $99 genetic profile she got of her 5 year old adopted daughter. I was interviewed for this story because of my work on the use of genetic markers as potential risk adjustor/underwriting variables for private long term care insurance and the fact that the author’s daughter was found to have the e4/e4 variant of APOE-4 which confers increased risk of Alzheimer’s disease.
The author of the story (it is published under a pseudonym) and I talked for a long time, and her anxiety about her daughter getting Alzheimer’s disease was palpable, a result to which she had locked onto. My advice to her was this:
But I appreciate the advice from Duke’s Don Taylor most. “It’s possible the best thing you can do is burn that damn report and never think of it again,” he said. “I’m just talking now as a parent. Do not wreck yourself about your 5-year-old getting Alzheimer’s. Worry more about the fact that when she’s a teenager she might be driving around in cars with drunk boys.”
It is not that AD is not a terrible disease, and goodness knows our nation’s long term care system is messed up, but you can only worry about so many things at once. There must be good uses of such genetic profiles, but it seems easier to get it wrong than right. And coming up with a coherent long term system is not important because a given person is at increased risk of AD, but because we know for certain that many of use now alive will contract the disease, it is just not clear who.
cross posted at freeforall.