ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Disability inclusion in precision medicine research: a first national survey.
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 33 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
33 citing papers in PubMed.
- "It didn't feel like anything unusual because we had already been through so much": Disability-related research experiences of families with children enrolled in the undiagnosed diseases network.Genetics in medicine : official journal of the American College of Medical Genetics · 2026Article
- "I make my own decisions": Views on precision medicine research participation decisions from adults with intellectual disability.HGG advances · 2026Article
- Survey on new technologies and precision medicine to advance healthcare.Journal of community genetics · 2026Article
- Adults with Intellectual Disability and Consent to Precision Medicine Research: Using Supported Decision-Making to Facilitate First-Person Consent.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2026Article
- "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
- Perceptions of and willingness to participate in genomics research among a U.S. sample.Frontiers in genetics · 2026Article
- Protocol: Strategies to Enhance Inclusion in Informed Consent Practice for People With Vision and/or Hearing Support Needs: A Systematic Review.Campbell systematic reviews · 2025Article
- Towards trustworthiness of precision medicine research for people with disabilities.Nature genetics · 2025Article
- Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability.American journal on intellectual and developmental disabilities · 2025Article
- Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?The American journal of bioethics : AJOB · 2025Article
- Nothing about Us without Us in Precision Medicine: A Call to Reframe Disability Difference in Genetics and Genomics.The Hastings Center report · 2024Article
- The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.Cambridge prisms. Precision medicine · 2024Review
- Underrepresentation of blind and deaf participants in the All of Us Research Program.Nature medicine · 2023Article
- Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling.HGG advances · 2023Article
- The need for an intersectionality framework in precision medicine research.American journal of human genetics · 2023Article
- Education and electronic medical records and genomics network, challenges, and lessons learned from a large-scale clinical trial using polygenic risk scores.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Review
- Toward Equity in Research on Intellectual and Developmental Disabilities.American journal on intellectual and developmental disabilities · 2023Article
- People with disability and privacy in precision medicine research: what's at stake?Trends in genetics : TIG · 2023Article
- Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability.International journal for equity in health · 2022Review
- Addressing underrepresentation in genomics research through community engagement.American journal of human genetics · 2022Review
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
purposeIncluding people with disabilities in precision medicine research (PMR) is key for increasing cohorts' diversity, improving understanding of population health, and attaining social justice for the United States' largest health disparities group. We conducted a national survey to explore the views of people with disabilities about PMR.
methodsAn online survey was developed in disability-accessible formats. Key questions included views on PMR, willingness to participate and to provide data, perceived barriers to participation and potential remedies, and interest in engagement in the study. Analyses described results for all participants and compared results for key demographic characteristics.
resultsIn total, 1294 participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR; to provide lifestyle, biological, and medical information; and to engage with the study. However, 76% identified a total of 3 to 8 barriers to participation, and most would not provide environmental samples or information from their social media account(s) and activity trackers. Differences were observed across racial, ethnic, and gender groups and are discussed.
conclusionsBarriers to disability inclusion need to be removed, and further research conducted to better understand concerns about PMR and to develop studies that resonate with the interests and needs of this population.
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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.