A Time article asks the question:
The test results were crystal clear, and still the doctors didn’t know what to do. A sick baby whose genome was analyzed at the Children’s Hospital of Philadelphia turned out to possess a genetic mutation that indicated dementia would likely take root around age 40. But that lab result was completely unrelated to the reason the baby’s DNA was being tested, leaving the doctors to debate: Should they share the bad news?
When it comes to scanning DNA or sequencing the genome — reading the entire genetic code — what to do with unanticipated results is one of the thorniest issues confronting the medical community. Many conflicted discussions followed the dementia discovery at the Children’s Hospital of Philadelphia (CHOP) before a decision was reached: the parents would not be told that this fatal memory-sapping disease likely lurks in their child’s future. Given the hopelessness of the situation, with no treatment and no cure, the doctors said forwarding such information along felt pointless. “We came around to the realization that we could not divulge that information,” says Nancy Spinner, who directs the hospital laboratory that tested the infant. “One of the basic principles of medicine is to do no harm.”
I’m pretty skeptical about that result. To be sure, knowing that one will likely get dementia at age 40 would be pretty awful. But think of all the things we do with an eye towards our middle age and later years. We might get lots of education, planning on having an academic career that begins at 35. We might put off having children under our late 30s. We might save in a particular way, expecting to work until our mid-60s and then have a retirement in which we might want to spend money on an enjoyable lifestyle.
I know that I’ve organized my life in some measure around having (likely having, one can never be certain) a normal span of cognitively unimpaired working years, followed by a normal span of time after a normal working career. If you had told me that I would be dead at 40, I might have planned things differently. (I might have had kids earlier, if I could find a woman who was willing to have them with me, or not had them at all.) Likewise, I suspect, if you had told me that I would likely get dementia at 40. Yes, I’d have been very unhappy at first, and perhaps throughout; but I suspect I would have avoided certain investments of time and effort, and other plans, that would have proven useless.
Now maybe that’s not so; maybe knowing such things would have been all cost and no benefit, or at least so lopsidedly cost that I would rather have not known. I can’t be sure, of course, never having had to face this. But I don’t think that one can simply say that “forwarding such information” to me — whether directly or through my parents — would have been “pointless.”
There are, of course, a lot of complicating factors. It sounds like we’re talking about likelihood of dementia starting at around 40, not certainty; maybe that complicates matters. Plus it’s certainly possible (perhaps likely?) that, 40 years from now, medical science would have some cure for the disease, or at least some way of putting it off. But on balance it still seems to me that this is the sort of information that we could reasonably expect our doctors to reveal to us.
Or am I wrong on this? I certainly haven’t focused on the matter closely, either in my own life or as a research matter — perhaps the doctors’ reaction is right, either for the reasons given or for some less obvious ones. I’d love to hear what others think about this. Thanks to Sarah Hoyt, guest-blogging at InstaPundit for the pointer.