Barriers to Participation in Genomic Health Research by African Americans and Other Minority Populations: A Systematic Review (P04-116-19)

Abstract

ObjectivesThe paucity of data for African-Americans (AAs) participating in health-related research (e.g., genomic research in nutrition) is often attributed to difficulty in recruitment and retention. The reasons for such unwillingness to participate remains unclear and could account for health disparities. Studies demonstrate that AAs may be more difficult to recruit and retain in genomic studies due to psychosocial impacts, cultural beliefs and other issues. Historically, these factors have shown to both affect participation and adversely influence health disparities, which may lead to premature death, reduced quality of life, missed economic opportunities, and inequalities. The purpose of this study was to conduct a systematic review to answer the following question: What are the barriers to acceptance of genomic health research among AAs and other minority populations? MethodsThis systematic review investigates acceptance barriers in AAs participating in health-related research involving DNA. A total of 37 articles met inclusion criteria for this review. Acceptance to participate in health-related research involving DNA were examined from articles published in PubMed and Scopus between 2008–2018. Results were based on feedback collected by trained research assistants and phlebotomists during interviews conducted in groups, face-to-face, via telephone, and responses collected from survey questionnaires. ResultsAA participation in health-related research is influenced by various pervasive factors including, but not limited to, perceived and/or actual experiences of mistrust and deceptiveness with investigators, misuse of genomic data, unethical research practices, healthcare system distrust, privacy concerns, socioeconomic influences, cultural beliefs and other influences associated with psychosocial factors. ConclusionsResults of this review are consistent with literature which shows diminishing participation of AAs in health-related research is attributable to a range of factors leading to growing concerns about health disparities. It is important to address these factors among diverse populations, and AAs in particular, who have not largely been represented in health-related research to promote better health outcomes and understand how to prevent and treat diseases. Funding SourcesHoward University.