ROCHESTER, Minn. — Many African-American women are willing to participate in medical research, but few are being asked. That's one conclusion of a survey by Mayo Clinic and The Links, Incorporated being presented today at the National Medical Association conference in Toronto.
Journalists: For video of Dr. Balls-Berry commenting on the research, visit the Mayo Clinic News Network.
The findings are from the results of a self-administered survey of 381 members of The Links, Incorporated, a national African-American women's service organization, during their 2012 National Assembly. The study was conducted to determine the experience-based knowledge, beliefs and practices about involvement in research studies by African-American women. It is part of an ongoing collaboration between Mayo and The Links, Incorporated, to improve health equity through research, health education and health care advocacy.
"Overall, we're pleased to see a high level of knowledge about medical research as well as willingness to participate in a variety of research studies like biobank and genetic studies," says
Joyce Balls-Berry, Ph.D., the Mayo Clinic epidemiologist presenting the study. "However, our findings indicate that we still need to improve understanding of research risks, assure participants of the ethical conduct of research, and increase specific levels of participation."
Conducting studies to eliminate disparities in health care is additionally important, say the researchers, because individuals and different population groups can be at greater risk for certain diseases and have differing reactions to specific treatments and medications.
Results showed that most respondents understood that participants have a right to withdraw from research if they choose and that not every participant in research studies will receive a treatment or new drug. A smaller percentage, a little over two-thirds, understood the process for ethical review of research participation and reimbursement for adverse effects. Yet, a majority had generally favorable attitudes toward research.
More than one-third were "extremely willing" to participate in a biobank or in genetic studies; 13 percent were "extremely willing" to enroll in a clinical trial. Roughly a fourth were "extremely willing" to allow their medical records to be used for research. Importantly, few of the women had ever been asked to participate in a health-related research study.
"We are excited that our collaborative efforts are resulting in more knowledge about African-American women's willingness to participate in health research," says Margot James Copeland, president of The Links, Incorporated.
The study was sponsored by Mayo Clinic and The Links, Incorporated. The scientific team also includes Carmen Radecki Breitkopf, Ph.D., Sharonne Hayes, M.D., and Monica Albertie, all of Mayo Clinic; Michele Halyard, M.D., of Mayo Clinic and The Links, Incorporated; and Monica Parker, M.D., and Vivian Pinn, M.D., of The Links, Incorporated.
The Links, Incorporated, celebrates more than 65 years as a women's volunteer service organization committed to enriching, sustaining and ensuring the cultural and economic survival of African Americans and other persons of African ancestry. A premier international service organization with more than 12,000 members in 276 chapters located in 41 states, the District of Columbia, and the Commonwealth of the Bahamas.
The members of The Links, Incorporated are influential decision makers and opinion leaders. The Links, Incorporated has attracted many distinguished women who are individual achievers and who have made a difference in their communities and the world. They are business and civic leaders, role models, mentors, activists and volunteers who work towards a common vision by engaging like-minded organizations and individuals for partnership.