ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Including the blind community in precision medicine research: findings from a national survey and recommendations.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 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
10 citing papers in PubMed.
- Co-Designing Medication Safety Interventions for Community Pharmacy: Bringing Together People Living With Visual Impairments and Community Pharmacists Using a Modified Nominal Group Technique Approach.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Impact of Disability on Postoperative Outcomes After Gastrointestinal Cancer Surgery.Annals of surgical oncology · 2025Article
- Nothing about Us without Us in Precision Medicine: A Call to Reframe Disability Difference in Genetics and Genomics.The Hastings Center report · 2024Article
- Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape.The Hastings Center report · 2024Article
- The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.Cambridge prisms. Precision medicine · 2024Review
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Data sharing and community-engaged research.Science (New York, N.Y.) · 2022Article
- Addressing underrepresentation in genomics research through community engagement.American journal of human genetics · 2022Review
- Patients' and professionals' views related to ethical issues in precision medicine: a mixed research synthesis.BMC medical ethics · 2021Review
- In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research.Public health genomics · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
purposeDespite ongoing efforts to increase diversity of cohorts in precision medicine research (PMR), little is known about the obstacles to inclusion of blind people and those with low vision ("the blind community") in PMR. The blind community comprises ~10% of the US adult population and its members commonly experience health disparities. Understanding barriers to inclusion of this community is necessary to facilitate their participation.
methodsAn online survey was developed in disability-accessible formats. Key questions included views on PMR; willingness to participate, provide data, and engage in the study; data sharing and consent; and perceived barriers to participation. Analyses describe results for all participants.
resultsTwo hundred seventy-one blind/low-vision participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR, to provide lifestyle, biological and medical information, to engage with the study, and to have their data shared with other researchers. Preferences for data sharing and consent models varied. Significantly, 65% identified 3-6 barriers to participation, particularly inaccessible transportation, clinics, and facilities; inaccessible information; and attitudinal and institutional barriers.
conclusionRemoving the identified barriers is key. Measures that could increase inclusivity of blind people and those with low vision in PMR are suggested.
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.