Minority Alzheimer Prevention Research

     Thomas Goldsmith with “NewsObserver.com”, writes about Mr. Henry Edmonds, who discusses the reluctance of many Minorities to participate in Alzheimer’s prevention studies, and what can be done about it.

     "They want to know there is something coming back to the community," said Edmonds, who attended Shaw University in the 1960s and recalls being thrown in a segregated Raleigh jail during a downtown protest. "They want to know that their information is going to be secure and that they aren't going to be seen as guinea pigs."

     Previous studies of Alzheimer's disease have not included representative numbers of blacks. Research has attributed that trend to memories of efforts such as the notorious Tuskegee syphilis research -- which for decades denied treatment of the disease in black males to study its long-term effects -- and the long-lived North Carolina program to sterilize black women with mental disabilities. "People who are in my age group remember and are very hesitant about participating in any kind of a study," said Etheldreda Guion, 68, a black Durham resident who is a former lab worker, public-school science teacher and assistant principal.

     "Because of my background in science and the fact that I did work at Duke for six or seven years, I was more open to experimentation," she said.

     As a coordinator of the center's African-American Community Outreach Program, Edmonds assisted a successful recruitment drive in Jacksonville and is still talking up the registry in Durham and the Triangle. Efforts have included health fairs in churches and one-on-one talks that went beyond previous efforts to enlist black participants.

     "Researchers were not prepared to go into the African-American community and talk to people on a one-to-one basis," Edmonds said."Too, there's kind of a gap of cultural competence in terms of being aware of how to approach them and talk to them."

Read More at News Observer.com

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