Most of us know someone who knows someone who is dealing with the consequences of Alzheimer’s disease – whether it be a grandma, a mom or a distant relative. But if you are part of the African American community, chances are you are more frequently faced with this crushing reality. Indeed, it has been shown that African Americans (black people) are around twice more likely to develop Alzheimer’s disease than Caucasians (white people). 

 

When Ethnicity Actually Matters

When thinking about genetics and the genetic variants that can cause Alzheimer’s disease, it’s important to know that most of our current knowledge of the disease comes from studies of white people. While we, humans, all have the same genes, different ethnicities may carry different versions of the genes. The red hair variation, for example, is a common genetic variant among people of Western European ancestry, but is very rare in other ethnic groups. 

The same principle applies to the gene variants that cause Alzheimer’s disease. Recent genetic studies are pointing to the fact that the genetic variants responsible for the disease in Caucasians may be different to the one in the African American population. This implies that the clinical manifestation of the disease may also be different in various ethnic groups.  Vascular disease and diabetes, which are both known to be underlying conditions that increase the risk of Alzheimer’s disease, are also frequent among African Americans. 

These ethnic differences have led the Alzheimer’s Association to recognize Alzheimer’s disease as a an “emerging public health crisis among African Americans”.

 

More African Americans Needed in Research Studies

For centuries, observation of patients and how they respond to treatments has been a powerful way to advance medicine and our understanding of disease. Dr Alois Alzheimer was able to characterize Alzheimer’s disease by observing the very first known Alzheimer’s patient for over 4 years. After her passing, Dr Alzheimer performed a detailed study of the patient’s brain architecture. 

 

Fast-forward a 100 years and clinical studies are still one of the most powerful method available to gain scientific knowledge about a disease. You may have seen enrollment calls for clinical trials and other research studies, but did you know that your participation could make a powerful difference in the world of science – especially if you are of diverse ethnic background? 

When trying to investigate why African-American enrollment in research studies are so low, scientists have discovered that there is a great mistrust of doctors and scientists among the African-American community – and for valid reasons. Throughout history multiple infamous studies, with questionable ethics and underlying racism, have been conducted on African Americans and which tinted the relationship between the African American population and scientists. But nowadays mandatory transparency and patient-education give each participant of a research study the ability to know in great detail what the goal of the study is and what it entails. From giving a DNA sample to participating in a drug trial or donating their brains to research, genetically diverse individuals all have the potential to revolutionize our understanding of the disease. Your participation in clinical research is a gift to your children and your children’s children.

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