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Want to Know Your Genetic Risk for Alzheimer's?

  • There has been ongoing debate between the advocates for knowing one's risks for Alzheimer's disease and those who think the information is, at best useless and at worst, possibly harmful. This has been a particularly vigorous debate with regard to genetic information and the ApoE4 allele that is known to be present in about 15% of the general population but about a half of all those diagnosed with Alzheimer's disease. The respective arguments break out as follows:

    In favor of knowing genetic risk

    Such knowledge will relieve the needlessly worried if their genetic risks are low and may encourage a more proactive approach toward managing other risk factors when the genetic risks are high. Additionally, those who face a higher risk can work with their physicians to be vigilant in monitoring cognitive health and can act on any emerging symptoms with alacrity. Doing so increases the likelihood of timely intervention and optimal treatment effects if and when signs of the disease begin to surface.

    Against knowing genetic risk

    Such knowledge may lead to undue anxiety and depression among those with high genetic risks, especially since there is no cure for Alzheimer's disease. Having higher risk does not guarantee that one will eventually get Alzheimer's disease so increased worry, based on higher risk factors, might bring needless emotional harm.

    As evidence about treatment efficacy and the benefits of early intervention continues to grow, the expert community is increasingly aligned in favor of knowing genetic risks. In addition to this growing body of evidence suggesting that it is best to know, we have begun to see an erosion of the argument against knowing. In fact, the speculation that learning about risks might produce emotional distress is looking increasingly off base as two recent studies (published in the journals Alzheimer's and Dementia and New England Journal of Medicine respectively) have suggested the opposite. That is, people who learn that they have high risks apparently do not suffer increased emotional distress from that knowledge. If anything, they gain a small sense of relief and certainty, as questions about their health risks become one shade less ambiguous. This represents the proverbial "free lunch" as it is a potential gain without an associated cost.

    Such academic debate as we have seen on this issue, followed by research and the subsequent assimilation of new facts, is the scientific process at work. This process generally serves us well and brings important information through a vetting process and into mainstream healthcare. It is a shame that this can sometimes seem to prevent more rapid adoption of beneficial ideas and points of view but it does so to prevent harmful ideas, ones that may look helpful on the surface, from permeating prematurely.

    In any case, it seems as though this debate may be nearing a conclusion. The argument against knowing one's genetic risks for Alzheimer's disease has undersold the effectiveness of current treatments in some patients, especially when intervention occurs at an early stage of the disease. To the extent that this argument has discouraged otherwise proactive patients from seeking professional medical attention at the onset of even subtle symptoms, it has hampered one of our most useful weapons against Alzheimer's disease, that of early intervention.

    To be clear, no one should have personal genetic information thrust upon them if they don't wish to know it. But among the increasingly well-educated consumers of health care, there is an appetite for information and everyone has a right to know about their own risks.

    The bottom line is this: enlightened physicians and informed patients are increasingly choosing to learn as much as possible about their risks in order to mange their health through an educated approach. The evidence shows that it makes good sense to know your risks, to manage them, and to be proactive when symptoms emerge.