Why Doctors Withheld a Debilitating Diagnosis

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How much should physicians tell us about our DNA, if we don't ask?

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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.

Is the well-being of the patient paramount? Does the effect on anyone else count? What about the effects on everyone else?

Say that the parents would be better off never knowing about the condition: Imagine they'd die happy before their child's 40th birthday if ignorant about the terrible turn his or her life would take, whereas knowledge of it throughout life would make every day they lived less happy or more guilt-ridden. What if, despite that effect on the parents, the life of the child really would be improved by knowing? What if it would be only slightly improved? Is this a utility-maximizing question?

Of course, the fact that the parents and the child are the only people who interact with the doctors doesn't mean they're the only people affected. The child might grow up and get married, or have kids, or join a combat unit in the military, or fly passenger planes. Do the potential impacts on that unknown set of people matter? After all, knowing his or her fate, the patient would perhaps avoid having a child in his 30s, or buy insurance to ensure his family could survive financially when he could no longer work, or avoid marriage so that a spouse wouldn't be burdened with his care, or permit a co-worker to benefit from the training opportunity.

He or she might live a life where the knowledge would help mitigate a significant harm to another; or a life where his or her ignorance would leave others no worse off (or even better off).

If at 40, a man was certain to develop a painful, contagious disease, the doctors would surely tell him, if only to benefit others. Our moral intuition would be that he has a responsibility to bear the burden of the knowledge, and to prevent others from being infected with his germs. Yet I don't feel the doctors acted irresponsibly by not telling their future dementia patient about the condition, even though others will very likely suffer pain because of it. Even if I knew others would suffer pain as a result of the patient's ignorance, I wouldn't feel the same as if it were a painful contagion.

Why is that?

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Conor Friedersdorf is a staff writer at The Atlantic, where he focuses on politics and national affairs. He lives in Venice, California, and is the founding editor of The Best of Journalism, a newsletter devoted to exceptional nonfiction.

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