To know one’s fate or not to know?

In the Greek tragedy Prometheus Bound (attributed to Aeschylus), the priestess “Io” pleads to Prometheus, “Oh hide not from me what I have to suffer!”  Prometheus responds, “it is better for thee not to know…seek not thou to know thine own fate.”  A few hundred years later Cicero opined, “Moreover, often it’s not even advantageous to know what’s going to happen; for it’s wretched for a man to be tortured when he’s powerless to do anything about it, and to lack even the last consolation of hope, which is available to all.”

These ancient words of wisdom should be heeded by neuroscientists who venture to diagnose Alzheimer’s disease years before more severe symptoms of the disease begin to appear.  They refer to this newly discovered stage of Alzheimer’s as “preclinical Alzheimer’s disease.”  Indeed, it seems reasonable to think that Alzheimer’s is not something that occurs suddenly in old age, but over an extended period of time before the advent of critical memory loss.  And if this is the case, then it stands to reason that scientists may acquire the ability to detect it in its preclinical stage.

I have two concerns:

1)  How accurate is the diagnosis?  According to Kenneth Covinsky (who holds the Edmund G. Brown Sr. Professorship in Geriatrics in the University of California, San Francisco, Department of Medicine), “The guideline for preclinical Alzheimer’s disease is emphatic that the state of the science is not good enough to diagnose this stage in clinical practice.”  In other words, scientists currently do not have the capacity to truly diagnose Alzheimer’s at a preclinical stage.  But Covinsky warns that the essential problem with early diagnosis is that it “labels people who have completely normal cognitive function as having an illness. A key question is whether using this label will make patients better off.”  Some additional problems include evidence that individuals with “preclinical Alzheimer’s disease” may not actually contract the disease.  According to Covinsky, “many, if not most, people with these biomarkers will never get Alzheimer’s disease. For example, autopsy finding suggestive of Alzheimer’s disease are commonly found in people who never had symptoms.”  Furthermore, because “the link between the biological markers of the disease process and the clinical expression of the disease is highly variable,” Covinsky believes that “it is unlikely that we will ever be able to tell the vast majority of cognitively normal patients for sure whether they will develop Alzheimer’s disease.”  (The Hastings Center Report, Bioethics Forum, July 15, 2011).

2)  My second concern is with the potential moral dilemmas that emerge from the diagnosis of a pre-symptomatic illness.  Suppose you are told at a very early age that you are at a high risk for Alzheimer’s disease?  The question is, do you keep that information to yourself, or do you divulge it to others?  Are you morally obligated to inform a future spouse or employer of your “preclinical disease?”  So, even if it becomes possible to determine that an individual has “preclinical Alzheimer’s disease,” is it really a good idea to know this information?  Perhaps it is, if treatment is available.  Until then, we should follow the advice of Prometheus and Cicero and choose not to know.
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chris audino

This is, indeed, a conflicting matter. As our technical ability to diagnosis surpasses our ability to treat the diagnosis, what good is the ability to (pre) diagnose? Unfortunately, Alzheimer’s disease is one good example of this among many.

Yours is a helpful reminder that it is not necessarily advantageous to know what is going to happen, especially when it involves suffering. And while it may be beneficial for the sake of research, I, for one, am not interested in knowing of a disease that I cannot prevent.