Enhancing the participation of african americans in health-related genetic research: findings of a collaborative academic and community-based research study.
- Authors
- Millon Underwood, Sandra; Buseh, Aaron G; Kelber, Sheryl T; Stevens, Patricia E; Townsend, Leolia
- Year
- 2013
- Journal
- Nursing research and practice
- PMID
- 24369499
- DOI
- 10.1155/2013/749563
- PMCID
- PMC3867877
The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans (n = 212) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research (P < .05). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they "had never been asked." Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.
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| Recruitment strategies and lessons learned from a large genetic study of African Americans. | Salowe RJ et al. | — | 2022 | → |
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| Attitudes and experiences regarding genetic research among persons of African descent. | Scott DM et al. | — | 2020 | → |
| Factors associated with participation by African Americans in a study of the genetics of glaucoma. | Parikh R et al. | — | 2019 | → |
| International Society of Psychiatric Genetics Ethics Committee: Issues facing us. | Lázaro-Muñoz G et al. | — | 2019 | → |
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| Using the diffusion of innovations model to guide participant engagement in the genomics era. | Lewis KL et al. | — | 2019 | → |
| Public Understanding and Opinions regarding Genetic Research on Alzheimer's Disease. | Kent S et al. | — | 2018 | → |
| Cardiovascular Health in African Americans: A Scientific Statement From the American Heart Association. | Carnethon MR et al. | — | 2017 | → |
| Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach. | Culhane-Pera KA et al. | — | 2017 | → |
| Learning from Latino voices: Focus Groups' Insights on Participation in Genetic Research. | Martinez P et al. | — | 2017 | → |
| Race, Genomics and Chronic Disease: What Patients with African Ancestry Have to Say. | Horowitz CR et al. | — | 2017 | → |
| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | Dick DM et al. | — | 2017 | → |
| Increasing participation in genomic research and biobanking through community-based capacity building. | Cohn EG et al. | — | 2015 | → |
| Consent to specimen storage and continuing studies by race and ethnicity: a large dataset analysis using the 2011-2012 National Health and Nutrition Examination Survey. | Gabriel A et al. | — | 2014 | → |