ArticleJournal of cultural diversity2009
Decisions to participate in fragile X and other genomics-related research: Native American and African American voices.
Article in Journal of cultural diversity, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
18 citing papers in PubMed, 2 syntheses or guidelines pooled it, 26 citations in OpenAlex.
- A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.Journal of the American Medical Informatics Association : JAMIA · 2020Pooled it
- A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.American journal of public health · 2014Pooled it
- Cultural, ethical, legal, and social considerations in genomics research with Indigenous Peoples: A scoping review.European journal of human genetics : EJHG · 2026Article
- Article
- Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review.BMC global and public health · 2024Article
- Qualitative genomic research with Indigenous peoples: a scoping review of participatory practice.BMJ global health · 2024Article
- Strategies for Improving Enrollment of Diverse Populations with a Focus on Lipid-Lowering Clinical Trials.Current cardiology reports · 2023Review
- Predictors, Parental Views, and Concordance Across Diagnostic Sources of Autism in Male Youth with Fragile X Syndrome: Clinical Best Estimate and Community Diagnoses.Research on child and adolescent psychopathology · 2023Article
- Family history of FXTAS is associated with age-related cognitive-linguistic decline among mothers with the FMR1 premutation.Journal of neurodevelopmental disorders · 2022Article
- Enhancing Recruitment and Retention of Minority Populations for Clinical Research in Pulmonary, Critical Care, and Sleep Medicine: An Official American Thoracic Society Research Statement.American journal of respiratory and critical care medicine · 2021Article
- Recruitment of racial/ethnic minority older adults through community sites for focus group discussions.BMC public health · 2017Article
- Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.Journal of community genetics · 2017Article
- Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled.PLoS medicine · 2015Article
- Views of Black nurses toward genetic research and testing.Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing · 2013Article
- Recruitment for genetic studies of epilepsy.Epilepsy research · 2012Article
- How Do Low-Income Urban African Americans and Latinos Feel about Telemedicine? A Diffusion of Innovation Analysis.International journal of telemedicine and applications · 2012Article
- Pilot Evaluation of the Biopsychosocial Screening Inventory for Fragile X Syndrome (BIPSSI-FX) with an Extended African American Family.Journal of theory construction & testing · 2012Article
- Using focus groups in community-based participatory research: challenges and resolutions.Qualitative health research · 2010Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 1 institution in 1 country.
Funding
Abstract
unlabelledThe lack of adequate minority representation, including Native-Americans (NA) and African-Americans (AA), in health related research is well documented. Nowhere is this truer than in the area of genomics-related research, which is especially troubling as NA and AA have some of the highest rates of overall morbidity and mortality due to genetic diseases.
objectivesThe purpose of this study is to explore factors associated with the under representation of NA and AA adults in genetic research including: (1) decision barriers, (2) the influence of health care networks, (3) recruitment preferences, and (4) health conditions.
methodsEight focus groups were conducted, each by led by individuals who shared racial/cultural identification with participants. Adherence to tenants of Community Based Participatory Research (CBPR) was maintained. Qualitative data were analyzed using NVIVO program analyses and the constant comparative method.
resultsThemes supported the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research.
conclusionsCommunity-based approaches may enhance representation of minorities in genomics-related research crucial to eliminating health disparities.
Indexed as
Identifiers
19824292PMC12443038W193955087What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.