Even though African-Americans have a higher risk of developing Alzheimer’s compared to Caucasians, they join research studies in much smaller numbers.
The Wisconsin Registry for Alzheimer’s Prevention is trying to overcome the distrust. It has an ongoing study, beginning in 2001, and 1500 people have been recruited, and the study will last for 15 to 20 years. By 2008, only 7 African-American participants were in the study. Recently, that number has increased to 122.
To me, the reluctance and mistrust are understandable. Especially shocking and callous was the Tuskegee Study, which lasted decades. It enrolled African-American men diagnosed with syphilis. Initially, there was no effective treatment, but the researchers, after effective medication was found, deliberately withheld it.
Another example is detailed in the book “The Immortal Life of Henrietta Lacks.” She was a 31-year-old African-American mother of 5 who died of cervical cancer in 1951. Before her death, a physician at Johns Hopkins gave a slice of her tumor to another researcher who was trying to find human cells living outside the body. This technique is termed cell culture. The cells indeed grew and are named HeLa cells. They have been used for many years. They are commercialized and have generated millions of dollars in profits. They were used by Jonas Salk to develop the polio vaccine. The Lacks family was unaware that this had occurred until the mid-1970s. They have received no compensation.
See the Sunday, March 27, 2016, Los Angeles Times, article by Crocker Stephenson.
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