Research participants' opinions on genetic research and reasons for participation: a Jackson Heart Study focus group analysis.
- Authors
- Walker, Evelyn R; Nelson, Cheryl R; Antoine-LaVigne, Donna; Thigpen, Darcel T; Puggal, Mona A; Sarpong, Daniel E; Smith, Alice M
- Year
- 2014
- Journal
- Ethnicity & disease
- PMID
- 25065069
The Jackson Heart Study (JHS) convened focus groups to engage the community in dialogue on participation in the National, Heart, Lung and Blood Institute's Candidate Gene Resource (CARe) project. CARe, a genome wide association and candidate gene study, required the release of participant phenotypic and genotypic data with storage at NIH for widespread distribution to qualified researchers. The authors wanted to assess the willingness of an African American community to participate in the genetics research, given the past history of bioethical misconduct in ethnic minority communities. The discussion produced the following specific issues of interest: reasons for participants' interest in genetics research; participants' knowledge about the JHS; and participants' knowledge about genetics research and its advantages and disadvantages. Training on genetic issues was also developed for the JHS community and staff.
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| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | 2017 | 28240821 |
External
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| Community Collaboration in Public Health Genetic Literacy: Methods for Co-Designing Educational Resources for Equitable Genomics Research and Practice. | Salunke J et al. | — | 2025 | → |
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| Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review. | Iltis AS et al. | — | 2023 | → |
| Learning from Black/African American Participants: Applying the Integrated Behavioral Model to Assess Recruitment Strategies for a Glaucoma Genetic Study. | Kikut A et al. | — | 2022 | → |
| Recruitment strategies and lessons learned from a large genetic study of African Americans. | Salowe RJ et al. | — | 2022 | → |
| Engagement and return of results preferences among a primarily African American genomic sequencing research cohort. | Lewis KL et al. | — | 2021 | → |
| Attitudes and experiences regarding genetic research among persons of African descent. | Scott DM et al. | — | 2020 | → |
| Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age. | Cuccaro ML et al. | — | 2020 | → |
| Why African Americans say "No": A Study of Pharmacogenomic Research Participation. | Nooruddin M et al. | — | 2020 | → |
| A Review of African Americans' Beliefs and Attitudes About Genomic Studies: Opportunities for Message Design. | Scherr CL et al. | — | 2019 | → |
| Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies. | Saylor KW et al. | — | 2019 | → |
| Emerging Concepts in Precision Medicine and Cardiovascular Diseases in Racial and Ethnic Minority Populations. | Mensah GA et al. | — | 2019 | → |
| Factors associated with participation by African Americans in a study of the genetics of glaucoma. | Parikh R et al. | — | 2019 | → |
| Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study. | Joffe S et al. | — | 2019 | → |
| Precision Medicine: Familiarity, Perceived Health Drivers, and Genetic Testing Considerations Across Health Literacy Levels in a Diverse Sample. | Williams JR et al. | — | 2018 | → |
| Willingness to Participate in Longitudinal Research Among People with Chronic Pain Who Take Medical Cannabis: A Cross-Sectional Survey. | Bachhuber MA et al. | — | 2018 | → |
| Inclusion of diverse populations in genomic research and health services: Genomix workshop report. | Mathew SS 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 | → |
| Genome-wide association studies in Africans and African Americans: expanding the framework of the genomics of human traits and disease. | Peprah E et al. | — | 2015 | → |