ArticleGenetics in medicine : official journal of the American College of Medical Genetics2010
The role of race and trust in tissue/blood donation for genetic research.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03548779 (North Carolina Genomic Evaluation by Next-generation Exome Sequencing, 2), which is not on this map. Cited by 72 papers, 1 of them a synthesis that pooled it.
What it found
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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.
North Carolina Genomic Evaluation by Next-generation Exome Sequencing, 2
Who cites it
72 citing papers in PubMed, 1 synthesis or guideline pooled it, 101 citations in OpenAlex.
- A systematic review of strategies that increase the recruitment and retention of African American adults in genetic and genomic studies.The ABNF journal : official journal of the Association of Black Nursing Faculty in Higher Education, Inc · 2011Pooled it
- Does an interactive trust-enhanced electronic consent improve patient experiences when asked to share their health records for research? A randomized trial.Journal of the American Medical Informatics Association : JAMIA · 2019Trial
- Public trust in genomic risk assessment for type 2 diabetes mellitus.Journal of genetic counseling · 2014Trial
- Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives.Public health genomics · 2012Trial
- Women's perceptions of placenta donation for research purposes: a cross-sectional study from the MENA region.Philosophy, ethics, and humanities in medicine : PEHM · 2026Article
- Designing inclusive newborn sequencing research: insights from parents in underrepresented communities.BMC medical genomics · 2026Article
- Enrollment Patterns and Site-Level Predictors of Black Participant Recruitment to a Multisite Randomized Cancer Clinical Trial.JCO oncology advances · 2025Article
- Advancing Genetic Risk Assessment in Living Kidney Donation: A Comprehensive Approach to Patient Education and Counseling.Clinical journal of the American Society of Nephrology : CJASN · 2025Article
- The Inclusion of Underrepresented Populations in Cardiovascular Genetics and Epidemiology.Journal of cardiovascular development and disease · 2024Review
- Addressing chronic pain disparities between Black and White people: a narrative review of socio-ecological determinants.Pain management · 2023Review
- Combating Racism Through Research, Training, Practice, and Public Health Policies.Preventing chronic disease · 2023Article
- Interest in genetic testing and risk-reducing behavioral changes: results from a community health assessment in New York City.Journal of community genetics · 2022Article
- Addressing underrepresentation in genomics research through community engagement.American journal of human genetics · 2022Review
- Bricolage in medical education, an approach with potential to address complex problems.Medical education · 2022Article
- Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks.Health communication · 2020Article
- Research Participant Views regarding Qualitative Data Sharing.Ethics & human research · 2020Article
- An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.JCO global oncology · 2020Review
- Patient Preferences for Use of Archived Biospecimens from Oncology Trials When Adequacy of Informed Consent Is Unclear.The oncologist · 2020Article
- Why African Americans say "No": A Study of Pharmacogenomic Research Participation.Ethnicity & disease · 2020Article
12 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundPublic willingness to donate tissue samples is critical to genetic research. Prior work has linked minority status and mistrust with less willingness to provide specimens. Some have suggested recruitment of prior research participants to address these barriers. We present data from a genetic epidemiology study with a request for blood and/or saliva specimens to (1) measure willingness to donate tissue/blood samples, (2) identify demographic, trust, and other factors associated with willingness to donate samples, and (3) measure willingness to participate in future genetic research.
methodsWe surveyed participants in the North Carolina Colorectal Cancer Study, which included biologic sample collection from consenting participants. Participants were later asked about sample provision; trust in researchers, and future research participation.
resultsAfrican Americans were less likely to give a blood sample, when compared with whites (21% vs. 13%, P < 0.05). After controlling for "trust," this difference was no longer statistically significant (17% vs. 13%, P = 0.27). Those who had given samples were more likely to express willingness to participate in future research.
conclusionDespite prior participation in a genetic epidemiology study, factors associated with provision of tissue samples reflected many previously identified demographic factors (race and trust). Interventions to improve and demonstrate the trustworthiness of the research team and recruitment of subjects with a record of sample donation might enhance future study participation.
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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.