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Alzheimer’s Disease: To Test Or Not To Test?

The medical profession’s ability to diagnose far exceeds its ability to effectively treat the conditions discovered. Consider arthritis, Parkinson’s disease, irritable bowel syndrome, strokes, emphysema, and many cancers.

When a physician orders a diagnostic test, ideally it should be to answer a specific question, rather than a buckshot approach. A chest X-ray is not ordered because a patient has a cough. It should be done because the test has a reasonable chance of yielding information that would change the physician’s advice. If the doctor was going to prescribe an antibiotic anyway, then why order the chest X-ray?

Physicians and patients should ask before a test is performed if the information is likely to change the medical management. In other words, is a test being ordered because physicians want to know or because we really need to know the results?

Does every patient with a heart murmur, for example, need an echocardiogram, even though this test would be easy to justify to patients and to insurance companies? If the test won’t change anything, then it costs dollars and makes no sense. Spine X-rays for acute back strains are an example of a radiologic reflex.

While some tests yield too little information, others provide too much knowledge. I remember as a medical student discussing if healthy patients at risk for Huntington’s Chorea, a progressive and lethal neurologic condition, should be tested to determine if they will develop the disease.

Recently, the New York Times reported on a similar ethical controversy regarding testing to determine a person’s risk for developing Alzheimer’s disease, another progressive and incurable condition. Should we make efforts to identify patients with risk, or even certainly, of developing terrible diseases, which have no effective treatments? Would you want to arise each morning knowing that progressive dementia is in your future?

Each time you would misplace your keys, or had trouble finding a word, you would wonder if this was the leading edge of the impending meltdown. To me, this knowledge would result in a profound reduction in quality of life, and would also affect relationships with family and others. One could imagine diagnostic panels being run on young couples who are contemplating marriage, a new twist on pre-nuptial agreements. Could life and disability insurance carriers demand access to these results?

Is there a reasonable rebuttal to this view? Of course, folks are entitled to know their genetic predispositions, if they are properly counseled beforehand. These folks, knowing of a dim future, could modify their current priorities so they could enjoy a more satisfying life. These individuals may choose not to wait until retirement to take that trip around the world.

We must also keep in mind that medical tests are not always right. A “positive” Alzheimer’s test result might be dead wrong. Or, the individual might develop a very mild form of the disease. Genetics is a complex and murky universe.

Medical tests that provide too little information are wasteful and unnecessary. Those that provide too much information can be dangerous and destructive. If the plague of Alzheimer’s is in my future, I don’t want to know it now. Sure, knowledge is power, but sometimes sweet ignorance is bliss. Become a subscriber!

*This blog post was originally published at MD Whistleblower*

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One Response to “Alzheimer’s Disease: To Test Or Not To Test?”

  1. Dianne says:

    Re: “Could life and disability insurance carriers demand access to these results?” Does GINA apply here? For example, under GINA, if the carrier pays they have access to test results but can’t discriminate. (Or at least you have a legal remedy.) My second question is-I know there’s no currently no treatment, but are there therapies (drugs or cognitive) that potentially slow down cognitive decline? (If this is the case, arguably there’s more justification for testing.)

    I hear what you’re saying though about the need to weigh the benefit of testing, especially in this economic climate.

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