ArticleJournal of community genetics2017
Self-reported race and ethnicity of US biobank participants compared to the US Census.
Article in Journal of community genetics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 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
17 citing papers in PubMed, 2 syntheses or guidelines pooled it, 41 citations in OpenAlex.
- Polygenic Risk Score and Statin Relative Risk Reduction for Primary Prevention of Myocardial Infarction in a Real-World Population.Clinical pharmacology and therapeutics · 2022 · on this mapPooled it
- Genetic Influences on Patient-Oriented Outcomes in Traumatic Brain Injury: A Living Systematic Review of Non-Apolipoprotein E Single-Nucleotide Polymorphisms.Journal of neurotrauma · 2021Pooled it
- Increasing engagement of Spanish-speaking transgender Latinas in research: strategies from ChiCAS, a community-based participatory research intervention trial.Health education research · 2025Trial
- Article
- Demographics of lipoprotein(a) and stroke: The UK biobank.American journal of preventive cardiology · 2025Article
- Bench to all Bedsides in Genomics and Precision Medicine.Journal of the American Heart Association · 2025Article
- Functional genomics of OCTN2 variants informs protein-specific variant effect predictor for Carnitine Transporter Deficiency.Proceedings of the National Academy of Sciences of the United States of America · 2022Article
- Amplifying Their Voices: Advice, Guidance, and Perceived Value of Cancer Biobanking Research Among an Older, Diverse Cohort.Journal of cancer education : the official journal of the American Association for Cancer Education · 2022Article
- Cultural and linguistic adaptation of psychosocial measurements for latinx participants-Leveraging community-engaged research methods.Research in nursing & health · 2021Article
- Leveraging genetic ancestry to study health disparities.American journal of physical anthropology · 2021Article
- Community Stakeholders' Perspectives on Introducing Human Papillomavirus Vaccination and Biobanking Evidence-Based Programs Within Medically Underserved Communities: A Community-Engaged Approach.International quarterly of community health education · 2021Article
- Sleep health, diseases, and pain syndromes: findings from an electronic health record biobank.Sleep · 2021Article
- Big data in digital healthcare: lessons learnt and recommendations for general practice.Heredity · 2020Review
- Big Data in Context: Addressing the Twin Perils of Data Absenteeism and Chauvinism in the Context of Health Disparities Research.Journal of medical Internet research · 2020Article
- Deliberations About Genomic Research and Biobanks With Citizens of the Chickasaw Nation.Frontiers in genetics · 2020Article
- Inclusion of Indigenous Australians in biobanks: a step to reducing inequity in health care.The Medical journal of Australia · 2019Article
- Linking Education to Action: A Program to Increase Research Participation Among African American Women.Journal of women's health (2002) · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 1 country.
Funding
Abstract
Precision medicine envisions a future of effective diagnosis, treatment, and prevention grounded in precise understandings of the genetic and environmental determinants of disease. Given that the original genome-wide association studies represented a predominately European White population, and that diversity in genomic studies must account for genetic variation both within and across racial categories, new research studies are at a heightened risk for inadequate representation. Currently biological samples are being made available for sequencing in biobanks across the USA, but the diversity of those samples is unknown. The aims of this study were to describe the types of recruitment and enrollment materials used by US biobanks and the diversity of the samples contained within their collection. Biobank websites and brochures were evaluated for reading level, health literacy, and factors known to encourage the recruitment of minorities, such as showing pictures of diverse populations. Biobank managers were surveyed by mail on the methods and materials used for enrollment, recruitment, consent, and the self-reported race/ethnicity of biobank participants. From 51 US biobanks (68% response rate), recruitment and enrollment materials were in English only, and most of the websites and brochures exceeded a fifth-grade reading level. When compared to the 2015 US Census, self-reported race/ethnicity of participants was not significantly different for Whites (61%) and blacks (13%). The percentages were significantly lower for Hispanics and Latinos (18 vs. 7%, p = 0.00) and Hawaiian/Pacific Islanders (0.2 vs. 0.01%; p = 0.01) and higher for Asians (13 vs. 5%, p = 0.01). Materials for recruitment predominantly in English may limit participation by underrepresented populations.
Indexed as
Identifiers
What 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.