Black Women Move Past ‘Tuskegee Experiment’ Mistrust

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If a research survey of African American professional women is any indication, attitudes may be changing towards participation in medical research. Mayo Clinic and The Links, Incorporated researchers teamed up to survey members of the international women’s organization, and found that a majority of African American women surveyed are willing to or have taken part in medical research.

The results appear in the Journal of Women’s Health.

“Our findings are highly encouraging,” says Sharonne Hayes, M.D., Mayo Clinic cardiologist, co-author of the study, and director of Mayo’s Office of Diversity and Inclusion. “The more African Americans, both women and men, who participate in medical research, the better informed their physicians will be in treating a wide range of conditions. Instead of extrapolating findings from other populations, we’ll have more confidence in diagnostic and treatment recommendations.

The authors point to the long-standing distrust of scientists and research studies by many in the African American community, a reaction to unethical experiments in the last century. They say that, for decades, many African Americans did not take part in clinical studies, limiting the data on how diseases among Blacks could be better diagnosed and treated.

The study team examined 381 self-administered surveys taken during a 2012 conference of The Links, Incorporated, an organization comprised of college-educated women, the majority involved in a profession. The median age was 59. Just more than half said they felt medical research in America was ethical. Only 3 percent said that scientists couldn’t be trusted. One out of four said they thought participating in research was risky. Yet, 78 percent agreed with the statement, “Participation in research will mean better care.” Thirty-eight percent said they had already been involved in some kind of research study.

The authors caution against generalizing from this small sample to the overall African American population. They say more research is needed, as well as more education on the benefits of studies to community health and the need for healthy volunteers, as well as individuals with conditions being studied.

Mayo Clinic recently entered into a long-term collaboration with The Links, Incorporated, to work toward reducing health disparities through education and awareness programs and research. This study was supported by the Mayo Clinic Office of Health Disparities Research and the Mayo Clinic Center for Clinical and Translational Science.

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