ArticleMayo Clinic proceedings2014
Biobank participants' preferences for disclosure of genetic research results: perspectives from the OurGenes, OurHealth, OurCommunity project.
Article in Mayo Clinic proceedings, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 3 of them syntheses that pooled it.
What it found
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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.
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Who cites it
34 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Systematic review of preferences for additional findings from genomic testing.European journal of human genetics : EJHG · 2026Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.European journal of human genetics : EJHG · 2020Pooled it
- A comparison of genome cohort participants' genetic knowledge and preferences to receive genetic results before and after a genetics workshop.Journal of human genetics · 2018Trial
- Clinical implementation of a multidisciplinary pipeline for genome sequencing in rare diseases: A prospective, multicenter, observational cohort study.Clinical and translational medicine · 2025Article
- Parental perspectives regarding the return of genomic research results in neurodevelopmental disorders in South Africa: anticipated impact and preferences.Journal of community genetics · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.New genetics and society · 2022Article
- Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome.Journal of patient-centered research and reviews · 2022Article
- Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants.Journal of community genetics · 2021Article
- Biobanks and Individual Health Related Findings: from an Obstacle to an Incentive.Science and engineering ethics · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Implementing genomic screening in diverse populations.Genome medicine · 2021Article
- Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations.Journal of community genetics · 2020Article
- Frequency of ClinVar Pathogenic Variants in Chronic Kidney Disease Patients Surveyed for Return of Research Results at a Cleveland Public Hospital.Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing · 2020Article
- In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research.Public health genomics · 2020Article
- Research participants' preferences for receiving genetic risk information: a discrete choice experiment.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Points-to-consider on the return of results in epigenetic research.Genome medicine · 2019Review
- What People Want to Know About Their Genes: A Critical Review of the Literature on Large-Scale Genome Sequencing Studies.Healthcare (Basel, Switzerland) · 2018Review
- Willingness to Participate in a National Precision Medicine Cohort: Attitudes of Chronic Kidney Disease Patients at a Cleveland Public Hospital.Journal of personalized medicine · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
objectiveTo assess biobank participants' preferences for disclosure of genetic research results. PATIENTS AND
methodsWe conducted a cross-sectional survey of participants in the OurGenes, OurHealth, OurCommunity biobank. Respondents were surveyed about preferences for disclosure, importance of disclosure, communication of results with practitioners, and sharing of results after respondents' death. Multivariate regression analysis was used to assess independent sociodemographic and clinical predictors of disclosure preferences. Data collection occurred from June 6, 2011, to June 25, 2012.
resultsAmong 1154 biobank participants, 555 (48%) responded. Most thought that research result disclosure was important (90%). Preference for disclosure varied, depending on availability of disease treatment (90% vs 64%, P<.001), high vs low disease risk (79% vs 66%, P<.001), and serious vs mild disease (83% vs 68%, P<.001). More than half of respondents (57%) preferred disclosure even when there is uncertainty about the results' meaning, and 87% preferred disclosure if the disease is highly heritable. Older age was positively associated with interest in disclosure, whereas female sex, nonwhite race, diabetes mellitus, and depression and/or anxiety were negatively associated with disclosure. More than half of respondents (52%) would want their results returned to their nearest biological relative after death.
conclusionsOurGenes biobank participants report strong preferences for disclosure of research results, and most would designate a relative to receive results after death. Participant preferences for serious vs mild disease, high vs low disease risk, and availability of disease treatment differed significantly. Future research should consider family members' preferences for receiving research results from enrolled research participants.
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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.