Attitudes and beliefs of African Americans toward participation in medical research
Attitudes and beliefs of African Americans toward participation in medical research
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DOI：
10.1046/j.1525-1497.1999.07048.x
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发表时间：
1999-09-01
影响因子：
5.7
通讯作者：
Moody-Ayers, S
中科院分区：
文献类型：
--
作者：
Corbie-Smith, G;Thomas, SB;Moody-Ayers, S
目的：设计：1997年焦点小组访谈。患者：33名在城市公立医院门诊就医的非裔美国成年人参加五个焦点小组之一。测量和主要结果：测量非裔美国患者对医学研究的态度。参与者一致报告了对医生、科学家和政府的不信任。许多与会者描述了对临床医生和调查人员在涉及贫困或少数民族患者时的道德行为的关切，并列举了剥削的例子，作为他们不信任医疗机构的佐证。虽然参与者清楚塔斯基吉系统研究中侵犯人权的行为，但所有人都被误导了研究的历史事实。很少有参与者理解知情同意的概念。与会者认为签署该文件是放弃他们的自主权，是对医生的法律的保护。尽管有这些问题，与会者提出了建议，以提高少数民族参与research.CONCLUSIONS：在这项研究中的非裔美国人参与者描述了一个突出的障碍，参与临床研究的医学界的不信任。参与者描述了真实的和感知的剥削例子，以支持他们对研究人员的不信任。同意过程的目标是告知患者风险和益处，以促进自决，但这些参与者误解了这一目标。了解临床关系中人际信任的重要性可能被证明是提高临床试验参与度的重要因素。
OBJECTIVE: To describe barriers to participation of African Americans in research.DESIGN: Focus group interviews conducted in 1997.PATIENTS: Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups.MEASUREMENTS AND MAIN RESULTS: African-American patients' attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research.CONCLUSIONS: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.