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Alzheimer’s Research in Unexpected Places
Each year Alzheimer’s claims the lives of 500,000 Americans and affects more than 5.2 million. These numbers are set to increase dramatically as we approach 2050, when estimates indicate they may have tripled. Given the high economic costs of the disease – the RAND Corporation calculated that it may have topped two hundred billion dollars in 2013 – the race is on to find viable treatment options. This has led investigators to seek subjects amongst some unlikely populations. One of those groups is individuals with Down syndrome who have a far higher propensity than others for developing the disease.
Because of their likelihood of developing Alzheimer’s, the population with Down is both one of the groups most likely to benefit from early therapies, and one most likely to be helpful in clinical testing of treatments. But underlying this critical work are important questions around informed consent – the term used in medicine to indicate that a study participant has been appropriately warned of possible negative consequences of a course of research or treatment, and that he or she has agreed to participate. For those with Down syndrome, informed consent becomes a more complicated endeavor.
Some adults with Down syndrome (and other developmental disabilities) live on their own and do not have court appointed guardians who provide consent on their behalf. This raises serious questions about the process of obtaining informed consent for study participation. Studies have found that informed consent processes are riddled with problems around patient understanding. These issues are compounded when study participants are adults with Down syndrome, especially ones who are living independently. This is not just because of intellectual or developmental delays that may make it difficult to understand information, but also because researchers must take into account and monitor a plethora of Down-related health concerns that require management and oversight during, and perhaps following, participation. As baby boomers create a huge new market for Alzheimer medications and treatments, researchers will require more study participants to cash in. Those with Down syndrome offer unique opportunities to study the pathology and genetic components of the disease. Because of these opportunities we have a responsibility to ensure economic incentives are not permitted to erode protections in place for their, and other vulnerable populations’, safety just because their genetic anomalies may hold the key to better understanding and treatment of disease in the general population.