1999 | Giselle Corbie-Smith, MD, Stephen B. Thomas, PhD, Mark V. Williams, MD, Sandra Moody-Ayers, MD
African Americans face significant barriers to participating in medical research, primarily due to deep-seated mistrust of the medical community. This study, conducted in 1997 with 33 African-American adults, found that participants had strong concerns about the ethical conduct of researchers, particularly regarding the treatment of minority patients. Many were misinformed about the Tuskegee Syphilis Study, and few understood the concept of informed consent. Participants viewed signing consent forms as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, they provided recommendations for improving minority participation in research.
Participants described real and perceived examples of exploitation, including the Tuskegee Syphilis Study, which they believed validated their distrust of the medical establishment. They saw the consent process as a legal protection for researchers rather than a method to inform patients of risks and benefits. The goal of informed consent, to facilitate self-determination, was misinterpreted by participants. Understanding the importance of interpersonal trust in the clinical relationship may be key to enhancing participation in clinical trials.
Participants expressed mixed feelings about medical research, with older adults more likely to consider both benefits and risks. They were concerned about the potential for harm, including infection with unknown viruses, and the possibility of being used as "guinea pigs." Many believed that African Americans would not benefit from research findings due to racial discrimination and poverty. Despite these concerns, participants suggested strategies to increase participation, including more honest communication, complete information about risks and benefits, and better education about research.
The study highlights the need for improved informed consent processes and greater trust between patients and researchers. It also underscores the importance of addressing historical abuses, such as the Tuskegee Syphilis Study, to rebuild trust in the medical community. The findings emphasize the need for culturally sensitive approaches to recruitment and the importance of involving the African-American community in the research process. The study concludes that building trust through transparent communication and addressing historical injustices is essential for increasing participation in clinical research among African Americans.African Americans face significant barriers to participating in medical research, primarily due to deep-seated mistrust of the medical community. This study, conducted in 1997 with 33 African-American adults, found that participants had strong concerns about the ethical conduct of researchers, particularly regarding the treatment of minority patients. Many were misinformed about the Tuskegee Syphilis Study, and few understood the concept of informed consent. Participants viewed signing consent forms as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, they provided recommendations for improving minority participation in research.
Participants described real and perceived examples of exploitation, including the Tuskegee Syphilis Study, which they believed validated their distrust of the medical establishment. They saw the consent process as a legal protection for researchers rather than a method to inform patients of risks and benefits. The goal of informed consent, to facilitate self-determination, was misinterpreted by participants. Understanding the importance of interpersonal trust in the clinical relationship may be key to enhancing participation in clinical trials.
Participants expressed mixed feelings about medical research, with older adults more likely to consider both benefits and risks. They were concerned about the potential for harm, including infection with unknown viruses, and the possibility of being used as "guinea pigs." Many believed that African Americans would not benefit from research findings due to racial discrimination and poverty. Despite these concerns, participants suggested strategies to increase participation, including more honest communication, complete information about risks and benefits, and better education about research.
The study highlights the need for improved informed consent processes and greater trust between patients and researchers. It also underscores the importance of addressing historical abuses, such as the Tuskegee Syphilis Study, to rebuild trust in the medical community. The findings emphasize the need for culturally sensitive approaches to recruitment and the importance of involving the African-American community in the research process. The study concludes that building trust through transparent communication and addressing historical injustices is essential for increasing participation in clinical research among African Americans.