Sometimes I think bioethicists spend too much of their time looking for new ethical dilemmas rather than giving thoughtful guidance on the dilemmas we already have. A recent example: the New York Times wrote about a supposed ethical dilemma appearing in the wake of new tests that reveal the likelihood of whether an individual will get Alzheimer’s at some point in the future. As the article put it:
“Since there is no treatment for Alzheimer’s, is it a good thing to tell people, years earlier, that they have this progressive degenerative brain disease or have a good chance of getting it?…It is a quandary that is emblematic of major changes in the practice of medicine, affecting not just Alzheimer’s patients. Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms. At the same time, many of those diseases have no effective treatments. Does it help to know you are likely to get a disease if there is nothing you can do?”
My question is: “What’s the dilemma?”
It is not up to a doctor, or ethicists, or anyone else to decide what information “helps.” Individuals have the right to know whatever information is available regarding their health, life expectancies, risks or future, whether or not there is anything they can do to change any of it it at the moment. Mickey Mantle, the great baseball slugger, knew that all the males in his family had died young, and he made a conscious decision to live his own life wild, fast and reckless. It was, as it turned out, a very bad choice: Mantle unexpectedly survived his thirties and forties, but his uncontrolled drinking destroyed his health. Still it was his own choice, based on what he thought was a fate he couldn’t avoid. Others make better choices: a woman who knows she is likely to die in her forties may decide to have children before she is twenty. A man who knows that he is at risk to die by forty might choose to eschew medical school for a career that requires fewer years of preparation. As for the adult who learns that dementia is in his future, he may find it prudent to arrange an early and orderly transfer of ownership and management of his business, or to establish trusts for his family, or to start working extra hard on that “bucket list.” He might also choose to do nothing at all, but nevertheless, it is his choice to make, not some doctor who has decided that the kind and ethical course is to keep him ignorant of his own medical risks.
As is often the case in medicine, what is being called an ethical dilemma may be, in reality, a rationalization for conduct that avoids potential liability. If the medical profession can convince itself that “the right thing to do” is not to tell patients that they are at high risk of Alzheimer’s, then they can require patients to request the test results in exchange for signing consent forms stating that they understand that the results are not 100% accurate, and relieve the physician and lab of any liability should patients act on the information and the disease never appears.
So maybe we can blame the lawyers for this non-controversy rather than the ethicists. In either case, this ethical dilemma is an easy call. The ethical principles of fairness, respect, autonomy, loyalty and responsibility dictate the answer. The patient has a right to know good news or bad, unless he has made it clear to the doctor, in advance, that he or she doesn’t want the information.
Ethics Alarms 
Should this test be as routine as cholesterol screenings or pap smears? That could be considered an ethical dilemma. Should it be covered by insurance? Possible. What they wrote up? obviously not.
Hey look, I didn’t snipe at any of your examples (though I did think about it).
Thanks.
I would think it should not be covered by insurance until there is some treatment indicated for a positive result,as with high cholesterol, wouldn’t you? You touch on one reason I don’t see a big problem: if somebody doesn’t want to know, don’t get the test, or request that you not be told about the results.
As usual with the media, they miss the real point. The doctors and journalists look at the ethical dilemma as if they are God. “I know they will get Alzheimer’s, but if I can’t fix it, so should I tell them. What do I think would be better for these poor, ignorant commoners?” There is an ethical dilemma here, however.
The ethical dilemma is if the test results are sent to the insurance company and used as a reason to increase their premiums or refuse to issue or renew their life insurance, is that right? The former would happen under the current system and the latter is very possible. The health insurance company can get my test results and can use them to raise my rates. A life insurance company can require a physical and could require all sorts of test to determine my probability of dying young. The ethical dilemma is, how do we treat people that have a higher-than-average risk of getting seriously ill?
I think we tend to assume that insurance companies are some kind of magic resource that has an obligation to pay for everything that happens to us in ways that ensure that we have to pay as little as possible. Insurance companies accept wagers by its customers that the cost of the ultimate care (payout) required will be more than the bets (the premiums) that the customers pays to be covered. I d0n’t see why it is fair for the customer to have information the insurance company doesn’t; I don’t see why it is wrong for the company to refuse to accept a bet it can’t possibly win. I don’t even see what is wrong with factors like gender, race, region, education, family history and lifestyle being legitimate considerations to determine what a customer pays. There is a reason insurance used to be illegal: it is inherently a cold-blooded business.
As far as Altzheimer’s goes, if the individual knows, the insurance company should know too. It’s a practical dilemma, but not really an ethical one.
With our current debate on health care, I would argue that it is an ethical dilemma. Do we feel that everyone should be covered by health insurance at the same rate? Do we want most people covered, but those who are genetically unfortunate will have to suffer a lifetime in poverty because health insurance is priced out of their reach and they will have to pay out-of-pocket? With the current system, we will all be required to purchase health insurance. Will these unfortunate people be forced by law to pay unaffordable premiums (the current health plan for Michigan teachers is over $20,000/year for an individual)? What happens when they can’t pay? Should the rest of us subsidize them? Should we institute “involuntary euthanasia” like some European countries do?
I don’t disagree—they are ethical questions. They just aren’t ethical questions for insurance companies, which have no obligation to provide money-losing services. How, or whether, society chooses to make other provisions for those who can’t be insured through normal channels is an ethical issue–especially when someone is uninsurable due to his or her own choices, rather than bad luck or bad genes.