ArticleNature medicine2023
Underrepresentation of blind and deaf participants in the All of Us Research Program.
Article in Nature medicine, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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
11 citing papers in PubMed.
- Strengths and Limitations of All of Us Data Use for Public Health Research.American journal of public health · 2026Article
- Returning value to communities from the All of Us Research Program through the lens of social determinants of health and ethical, legal, and social implications.International journal for equity in health · 2026Review
- "It is important to me to know where the information is going": Views of adults with intellectual disability on data sharing in precision medicine research.Genetics in medicine open · 2026Article
- Negative descriptors in electronic health records of patients with diabetes.Journal of the American Medical Informatics Association : JAMIA · 2025Article
- Towards trustworthiness of precision medicine research for people with disabilities.Nature genetics · 2025Article
- Computable phenotypes to identify respiratory viral infections in the All of Us research program.Scientific reports · 2025Article
- Characterization of the phenotypic consequences of the Duffy-null genotype.Blood advances · 2025Article
- Retrieval-augmented generation for generative artificial intelligence in health care.npj health systems · 2025Review
- Nothing about Us without Us in Precision Medicine: A Call to Reframe Disability Difference in Genetics and Genomics.The Hastings Center report · 2024Article
- Invisible: People with Disability and (In)equity in Precision Medicine Research.The American journal of bioethics : AJOB · 2024Article
- Adaptive Recruitment Resource Allocation to Improve Cohort Representativeness in Participatory Biomedical Datasets.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2024Article
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.
Funding
Abstract
Blind and deaf individuals comprise large populations that often experience health disparities, with those from marginalized gender, racial, ethnic and low-socioeconomic communities commonly experiencing compounded health inequities. Including these populations in precision medicine research is critical for scientific benefits to accrue to them. We assessed representation of blind and deaf people in the All of Us Research Program (AoURP) 2018-2023 cohort of participants who provided electronic health records and compared it with the Centers for Disease Control and Prevention 2018 national estimates by key demographic characteristics and intersections thereof. Blind and deaf AoURP participants are considerably underrepresented in the cohort, especially among working-age adults (younger than age 65 years), as well as Asian and multi-racial participants. Analyses show compounded underrepresentation at the intersection of multiple marginalization (that is, racial or ethnic minoritized group, female sex, low education and low income), most substantively for working-age blind participants identifying as Black or African American female with education levels lower than high school (representing one-fifth of their national prevalence). Underrepresentation raises concerns about the generalizability of findings in studies that use these data and limited benefits for the already underserved blind and deaf populations.
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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.