Should patients be told of their risk for Alzheimers when there is no cure or treatment?

New diagnostic tests can detect the early signs of Alzheimer's Disease decades before the onset of dementia.    This raises the question: Does it help to know you have an incurable disease years before the onset of symptoms? The moral dilemma is whether patients should be told that they have a progressive degenerative brain disorder that has no cure and is not treatable.

While a MRI of the brain and a spinal tap can reveal early evidence of Alzheimer's Disease, genetic tests can show whether an individual is at high risk of getting Alzheimer's. A gene, APOE, has three variants and people with one of the variants, APO e4 (known as the "risk gene"), have a 12- to 15-fold increased risk of Alzheimer's Disease.

In a published study, ethicists and neurologists all concluded that it was not in the best interests of the patients to tell them that they are at increased risk of Alzheimer's Disease.  The study also revealed that the large majority of people want to know if they are at increased risk, even while knowing that there is no effective treatment for Alzheimer's.

To be in the study, a person had to have a first degree relative who had Alzheimer's, making it more likely that he/she would have the APO e4 gene.  When a test subject was told that he had the APO e4 gene, they began taking steps to reduce their risk and plan for their future. For example, persons at increased risk were more likely to buy long term care insurance and start exercising and taking vitamins and supplements.  Some say that they will take an early retirement and travel.  Most persons want to know, so they can tell their children and appreciate their remaining years before the progressive onset of dementia.

Should patients be told about their risk of Alzheimer's?  If a person wants to know their risk, they should be told.  It's that simple.  Why should physicians be allowed to withhold information that may be critical to someone's future?  It is ludicrous for physicians to think they can decide what is best for patients in terms of crucial information about their future.

It is an extreme example of paternalism that a physician can decide what is right or wrong for a patient in terms of disclosing the risk of a progressive and fatal brain disease. It's just amazing to me that ethicists and neurologists struggle with the "moral dilemma" of whether to tell patients about the risk for Alzheimer's Disease.  Physicians should stop playing big brother and give patients the right to make their own decisions whether they want to be informed about their risk fo Alzheimer's.



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