THE BLOG
02/06/2013 11:50 am ET | Updated Apr 08, 2013

To Know or Not to Know?

There is a general assumption that when it comes to personal medical information, the more you know the better off you are. We are pestered by physicians, nurses, friends, and family to get our annual exams (it is interesting to note that recent research has indicated there may not be such a strong correlation between annual checkups and lower mortality rates as has traditionally been thought) and keep our doctor's appointments in the hope that if there is something wrong with us, it will be detected early, and therefore hopefully cured or excised before it has become too late.

However, as medicine and technology march forward to the unyielding beat of "progress," we are beginning to encounter scenarios in which having all of the information may not be the best thing for us. Recently, there has been some speculation that new research may be able to detect those with a higher risk of Alzheimer's long before the actual symptoms of the disease set in. Now, on the face of it, this might seem like quite the breakthrough, but there are a myriad of opaque ethical issues that lurk below the surface.

Why wouldn't one want to know? We would want to know if we had cancer, or some other type of horrific, debilitating disease, so why not Alzheimer's? The answer is a relatively simple one. For Alzheimer's, there is no known cure (it is worth noting that there are several accepted treatments that may delay, but do not defeat the progression of the disease). Knowing you are much more likely to acquire the disease doesn't -- in this case -- help you. Unlike some forms of cancer, where early detection can be a key factor for survival, Alzheimer's is a disease where an early warning system may be more of a burden than help.

Unfortunately, Alzheimer's isn't the only malady that can be lumped into this category. There are several disorders and diseases that can be detected early but are also incurable. One of the most famous of these is Huntington chorea, more commonly known as Huntington's disease. Huntington's is a rare and debilitating genetic disorder that is inherited from one's parents. Because of the autosomal dominant nature of the disease, each offspring of an affected individual has a 50 percent chance of inheriting the condition. While there are several ways to help manage the disease, there is no cure, and so this again presents the question: Would one want to be informed?

Now, can Alzheimer's be managed if not cured? And does knowing about a disease earlier potentially help one to manage the symptoms? Through certain therapies, there is at least a limited potential to delay or alleviate some of the symptoms of Alzheimer's -- if for only a short while. While delayed symptoms would certainly be a welcome intervention, not everyone benefits from treatments intended for this purpose, and it is unclear if earlier detection would help with the management of the disease, because it is hard to manage symptoms if one is asymptomatic. Moreover, knowing one is at greater risk can carry potentially significant costs, namely anxiety and unhappiness during the remaining portion of life when symptoms are not present.

We often equate knowledge with power: The more we know, the better we are able to make decisions. This is a theory that rarely fails us, and in so doing takes on the trappings of fact. Unfortunately, there are cases where ignorance really may be bliss, and Alzheimer's isn't the only one. Sometimes the issue of "knowing" is that screening can lead to more harm than benefits with a variety of "false positive" results. Prostate cancer is a good example -- the patient's anxiety and desire to be "totally healthy" drives him to get treatment that may actually be riskier than the disease. Many forms of prostate cancer are very slow-growing, so the patient will likely die of other causes before the cancer becomes a problem -- but patients are worried and so undergo surgery that is itself risky and that can cause other problems, like incontinence or impotence. And this doesn't even take into account the harms related to burden of added costs to individuals and our health system.

There is another interesting aspect of this issue. Do physicians have some type of obligation to their patients to advise them to take these tests -- or not to take the tests? Should it be up to the discretion of the doctor, or is there a universal moral duty to inform or maintain silence?

At the end of the day, the decision must at a bare minimum involve the input of the patient. However, the type of advice a physician gives, and what options are recommended by that physician, will undoubtedly play a large roll in influencing the decision of the patient. It has been proven again and again that people implicitly trust medical professionals, and they have good reason to do so. Physicians have spent vast amounts of time, money, and effort to attain the position of trust that they enjoy, and with that trust comes a set of obligations. But what is the obligation in a situation where a patient has an incurable disease?

Like many other ethically-murky issues in medicine, some type of cost/benefit analysis seems like the most viable and straightforward solution. A primary caregiver needs to weigh up the potential risks and the potential rewards of advising a patient to be tested for a disease they are powerless to stop. Obviously, it is equally important to discuss the patient's options with the patient. To give advice blindly without first discussing all potential consequences and outcomes with the patient reeks of the worst type of medical paternalism. No one is suggesting that such an analysis would be easy, but as is so often the case in scenarios like these we are forced to make the best out of a bad hand.

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