Inherent mistrust of research institutions limits minority representation
Technical Insights' Science & Government Report
Palo Alto, Calif.--February 2, 2004-- Medical peer reviews are increasingly highlighting the inadequacy of minority representation in biomedical research. Ethnic minorities and African Americans in particular, seem hesitant to participate in clinical trials for fear of becoming unsuspecting test subjects for experimental drugs.
The absence or under representation of such a significant racial group can be detrimental to research. Studying racial and ethnic health disparities might, for example, help unravel the role of genetics in diseases such as cancers.
Another cause for national concern is that many minorities are hesitant to seek even routine preventative medical care, creating poor health status indicators of minority populations, which form a considerable portion of the American populace.
Recruitment for trials has been low in spite of the 1994 National Institutes of Health directive that makes the inclusion of minority groups and women mandatory in the patient populations of all agency-sponsored trials.
A primary reason could be the indelible memory of the U.S. government-sponsored Tuskegee Study that lead to the death of 128 African Americans between 1932 and 1972.
The 40-year long experiment mislead as many as 400 black men into believing that they were being treated for latent syphilis while researchers were, in fact, withholding treatment to study the natural progression of the disease.
Even a presidential apology on behalf of the people of the United States to the few surviving victims in 1997 seems only to have reinforced the distrust toward medical research among the general population.
"A shrouded history of unethical choices in research, misuse of minority participants, and a lack of safeguards to protect participants are doing little to change this perception," says Technical Insights Research Analyst David Kramer.
A patient, sustained outreach from research institutions to the minority communities is necessary to attract significant numbers to participate in clinical research.
Developing a customized outreach plan and enlisting the aid of community leaders and social service agencies to increase awareness can help create suitable contact points for target populations. The minority community needs to feel that without any racial discrimination from the system, the scientific knowledge gained through research will benefit them as well.
Urban clinics can be used to recruit patients for trial – a step that has already been successfully taken by the National Institute of Arthritis and Musculoskeletal and Skin Diseases and the National Institute of Allergy and Infectious Diseases.
Making the recruitment process more convenient, open, and safe is likely to encourage participation. Providing basic social services can also be an effective way to overcome barriers to recruiting under-represented populations in AIDS trials in inner cities.
New analysis by Technical Insights, a business unit of Frost & Sullivan (http://www.TechnicalInsights.frost.com), featured in Science & Government Report, examines the reasons for the disproportionate racial mix among subject populations in medical research studies. The analysis delves into the history, attitudes, and social issues that govern minority enrollment in clinical studies.
Technical Insights, a business unit of Frost & Sullivan, is an international technology information analysis business that produces a variety of technical news alerts, newsletters, and research services.
This analysis is part of the Science & Government Report, which includes analysis of government policy relating to science. Executive summaries and interviews are available to the press.
Source: Eurekalert & othersLast reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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