Distrust of Health System, Lack of Family Discussion Among Issues Hampering Organ Donation by African Americans

BUFFALO, N.Y. -- A survey of attitudes toward organ donation among African-American residents of Buffalo has shown that while nearly all respondents were aware of the concept, less than one-third said they would be willing to donate their organs.

Survey results, published in the November issue of the Journal of the National Medical Association, reflect a deep distrust of physicians and of the health-care system and reveal differences in attitude toward organ donation based on age and education level.

Researcher William J. Minniefield, doctoral student in the University at Buffalo's Department of Social and Preventive Medicine, said the results, while not from a randomized sample, show the importance of gearing organ-donation education programs among African Americans to age, level of education and specific misconceptions.

Of 173 persons in the convenience sample, only 24 percent said they trusted doctors. All 23 respondents in the 25-35-year age group said they didn't think they would get proper medical treatment if they were designated organ donors.

The fear that organs would be taken before donors were dead loomed large among those 18-24. Nearly three-quarters of this group said they also believed that "select people" would receive donated organs, not those who needed them the most.

Minniefield's interest in African-American organ donation is personal: His younger brother died of end-stage renal disease at age 40 while waiting for a kidney transplant.

Minniefield, also an adjunct assistant professor in UB's Department of African American Studies, established the Minority Organ Donation Education Program, Inc., in Western New York in 1998. He set out to determine why only 14 percent of African Americans are organ donors. The current survey was part of that effort.

The survey sample consisted of 96 females and 77 males between the ages of 18 and 73,

representing a median age of 29.5 years. The survey consisted of seven questions addressing the following topics: awareness of the concept of organ donation; willingness to donate; reasons for donating or not donating; family discussion of donation; trust in the medical system; importance of ethnicity of recipient, and familiarity with an organ donor.

Surveyors also collected demographic information, including age, level of education and religious affiliation.

Results confirmed a general distrust of the medical system among African Americans found in earlier studies, and pinpointed additional attitudes and situations in this community that could be prime targets for organ-donation education programs, including:

-- Age: Only 19 percent of participants between ages 18 and 24 said they would consider donating, compared to 36 percent of those over 35.

-- Education: Those with a high-school education or above were more likely to say they would donate.

-- Importance of family discussion of organ donation: 71 percent of respondents said the topic never came up.

-- Concept of a living donor: Only about half of the respondents knew about this option for donations of kidneys.

Paula Muti, M.D., UB associate professor of social and preventive medicine, is co-author on the study.