Enhancing Participation of Underrepresented Groups in Biomarker Studies

加强代表性不足的群体对生物标志物研究的参与

• 批准号: 7753415
• 负责人: Dorothy Farrar Edwards
• 金额: $ 20.94万
• 依托单位: UNIVERSITY OF WISCONSIN-MADISON
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-07-23 至 2014-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7753415
• 关键词: Address; Adult; African American; Alzheimer' s Disease; American Indians; Area; Attitude; Autopsy; Awareness; Basic Science; Behavior; Behavioral; Belief; Biological Markers; Biomedical Research; Biopsy; Blood; Cardiovascular Diseases; Cerebrospinal Fluid; Characteristics; Chronic Disease; Clinical Research; Cognitive; Collection; Commit; Communities; Community Health; Community Health Education; Community Participation; Community Surveys; Data; Development; Discrimination; Disease Marker; Education; Education and Outreach; Educational Materials; Enrollment; Exclusion Criteria; Failure; Family; Feedback; Focus Groups; Fright; Genetic; Genetic screening method; Goals; Government-Sponsored Programs; Health; Health Educators; Health education; Image; Immigrant; Individual; Intention; Interview; Knowledge; Latino; Life Style; Liquid substance; Literature; Location; Longitudinal Studies; Lung diseases; Malignant Neoplasms; Measurable; Mediating; Medical; Methods; Minority; Minority Groups; Outcome; Participant; Persons; Physiological; Population; Prevention; Printed Media; Procedures; Process; Publications; Reliance; Research; Research Design; Research Personnel; Risk; Sampling; Side; Structure; Surveys; Testing; Time; Tissues; Training; Transportation; United States National Institutes of Health; Ursidae Family; Wisconsin; Work; base; career development; community based participatory research; cost; cultural competence; design; disability; disorder risk; health disparity; health equity; health literacy; informant; medically underserved; meetings; member; neuroimaging; outreach; outreach program; population based; preference; programs; socioeconomics; success; theories

A growing body of literature addresses the problems of recruitment and retention of minority participants in health related research programs.2 Historically, African Americans and other underrepresented groups have very low rates of participation in biomedical research.3"5 The results of both qualitative and quantitative studies have identified many common barriers to participation, as well as issues unique to each community. The majority of these studies have focused on African Americans, with fewer publications describing the attitudes and beliefs of Latinos and American Indians; however, the same themes consistently emerge across the groups. These six common factors include: 1) fear and mistrust based on episodes of unethical treatment by medical investigators or discrimination associated with government sponsored programs;6 2) low health literacy and lack of information about common health practices and chronic disease; 3) structural limitations in access to health for underrepresented populations; 4) sociocultural reliance on family and community for guidance and normative behaviors; 5) logistical barriers including the location of studies, transportation costs, time demands and study inclusion and exclusion criteria that may unintentionally limit enrollment of otherwise willing participants; and 6) perceived lack of cultural awareness and cultural competence on the part of many investigators and research staff.7

越来越多的文献讨论了招募和保留少数民族参与者的问题