ArticleJournal of community genetics2019
Cultivating inclusivity in precision medicine research: disability, diversity, and cultural competence.
Article in Journal of community genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 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
17 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
- Teaching developmental neurobiology with inclusion and valuing of neurodivergent learners.Developmental biology · 2026Review
- 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
- A Call for Inclusion: Children With Intellectual Disabilities in Trauma Treatment Research.Journal of intellectual disability research : JIDR · 2025Article
- Disability, Genetic Counseling, and Medical Education: From Eugenics to Anti-Ableism.Annual review of genomics and human genetics · 2025Review
- A bibliometric analysis of disability research in Saudi Arabia: Evolving trends, thematic mapping, and gaps.Saudi medical journal · 2025Article
- 'Being disabled' as an exclusion criterion for clinical trials: a scoping review.BMJ global health · 2023Article
- Committing to genomic answers for all kids: Evaluating inequity in genomic research enrollment.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- 'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents.Autism : the international journal of research and practice · 2023Article
- Increasing inclusivity in precision medicine research: Views of deaf and hard of hearing individuals.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Structural Racism in the COVID-19 Pandemic: Moving Forward.The American journal of bioethics : AJOB · 2021Article
- Delivering disability competencies of MCI's revised competency based curriculum at a medical university in North Karnataka.Medical journal, Armed Forces India · 2021Article
- Challenges in Diversity, Equity, and Inclusion in Research and Clinical Oncology.Frontiers in oncology · 2021Article
- Inclusion of People with Disabilities in Research to Improve Medication Adherence: A Systematic Review.Patient preference and adherence · 2021Review
- Article
- People With Disabilities in COVID-19: Fixing Our Priorities.The American journal of bioethics : AJOB · 2020Article
- 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
1 author.
Funding
Abstract
Cultural competence is increasingly viewed as key for the inclusion of diverse populations in precision medicine research (PMR) in the USA. Precision medicine researchers and personnel are thus increasingly expected to undergo cultural competency trainings and to engage with relevant racial/ethnic communities to ensure that all research components are culturally and linguistically sensitive to these communities. However, the need for PMR enterprises to ensure competence with and understanding of disability rights, history, and needs (hereinafter disability culture competency) have not received attention. This article discusses the importance of disability inclusivity in PMR and the construct-and challenges-of disability as a cultural community. Reviewing and extrapolating from studies in healthcare settings, the article considers three interrelated issues that are likely to impact disability inclusivity in PMR: disability accessibility and accommodation; disability stigma and unconsious bias; and disability language and communication. Next, disability competency trainings that were developed in healthcare settings are surveyed and their applicability for PMR is discussed. The arguments advanced are that disability culture competency among precision medicine researchers, personnel, and oversight committees is essential to upholding the welfare and rights of human subjects with disabilities in PMR; that engagement with disability communities is imperative for this endeavor; and that such knowledge of disability culture is crucial for cultivating inclusivity of people with different (dis)abilities in PMR.
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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.