ArticlePublic health genomics2020
In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research.
Article in Public health genomics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 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
19 citing papers in PubMed, 2 syntheses or guidelines pooled it, 23 citations in OpenAlex.
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- "I make my own decisions": Views on precision medicine research participation decisions from adults with intellectual disability.HGG advances · 2026Article
- Researchers' roadblocks to including people with intellectual and developmental disabilities (DD) in research: Translational science and I/DD program leaders insights.Journal of clinical and translational science · 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
- Preferences of research participants with experience receiving individual results for future return of results.Journal of clinical and translational science · 2026Article
- Ambiguities faced by parents who received a genetic diagnosis for autistic offspring with intellectual disabilities.Journal of community genetics · 2025Article
- Reducing translational science roadblocks to disability research.Journal of clinical and translational science · 2025Article
- Attitudes towards a multimodal precision medicine algorithm for predicting treatment response in depression: findings from a large cross-sectional European survey.Frontiers in psychiatry · 2025Article
- The need for an intersectionality framework in precision medicine research.American journal of human genetics · 2023Article
- Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.Journal of empirical research on human research ethics : JERHRE · 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
- Patients' and professionals' views related to ethical issues in precision medicine: a mixed research synthesis.BMC medical ethics · 2021Review
- Structural Racism in the COVID-19 Pandemic: Moving Forward.The American journal of bioethics : AJOB · 2021Article
- Teenagers and Precision Psychiatry: A Window of Opportunity.Public health genomics · 2021Article
- The ethics of genetic testing for kidney diseases.Nature reviews. Nephrology · 2020Article
- Spotlighting Structural Constraints on Decisions About Participation in Genomic and Precision Medicine.AJOB empirical bioethicsArticle
- Views of Genetic Testing for Autism Among Autism Self-Advocates: A Qualitative Study.AJOB empirical bioethicsArticle
- Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers.AJOB empirical bioethicsArticle
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 2 institutions in 1 country.
Funding
Abstract
purposeReturning genetic results to research participants is gaining momentum in the USA. It is believed to be an important step in exploring the impact of efforts to translate findings from research to bedside and public health benefits. Some also hope that this practice will incentivize research participation, especially among people from historically marginalized communities who are commonly underrepresented in research. However, research participants' interest in receiving nongenomic medical and nonmedical results that may emerge from precision medicine research (PMR) is understudied and no study to date has explored the views of people with disabilities about return of genomic and nongenomic results from PMR.
methodsIn a national online survey of people with disabilities, participants were queried about their interest in receiving biological, environmental, and lifestyle results from PMR (n = 1,294). Analyses describe findings for all of the participants and comparisons for key demographic characteristics and disability subgroups.
resultsThe participants expressed high interest in biological and health-related results and less interest in other findings. However, the interest among the study participants was lower than that found in comparable studies of the general population. Moreover, this interest varied significantly across gender, race/ethnicity, and disability subgroups. Possible reasons for these differences are discussed.
conclusionInsofar as return of results from PMR may impact translational efforts, it is important to better understand the role of sociomedical marginalization in decisions about return of results from PMR and to develop strategies to address existing barriers.
Indexed as
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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.