How much should physicians tell us about our DNA, if we don't ask?
An ethical dilemma posed in a Time magazine article grabbed my attention. "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," Bonnie Rochman writes. "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."
The doctors finally reached a decision - the parents would not be told:
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."
Law professor Eugene Volokh plays devil's advocate:
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.
What fascinates me about this dilemma, besides the fact that versions of it are only going to become more common, is the way it forces us to decide how many people count in the moral calculus. In advancing a claim about the "right" answer, we're implicitly making that value judgments.