ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Research participants' preferences for receiving genetic risk information: a discrete choice experiment.
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 14 papers, 5 of them syntheses that pooled it.
What it found
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Who cites it
14 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- Systematic review of preferences for additional findings from genomic testing.European journal of human genetics : EJHG · 2026Pooled it
- The Evolving Landscape of Discrete Choice Experiments in Health Economics: A Systematic Review.PharmacoEconomics · 2025Pooled it
- Public Preferences for Genetic and Genomic Risk-Informed Chronic Disease Screening and Early Detection: A Systematic Review of Discrete Choice Experiments.Applied health economics and health policy · 2025Pooled it
- A Systematic Review of Discrete Choice Experiments and Conjoint Analysis on Genetic Testing.The patient · 2022Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Trial
- Societal Preferences, Values and Priorities for Genomic Testing for Atrial Fibrillation: Evidence from Two Discrete Choice Experiments.The patient · 2026Article
- Public perceptions of genetic sequencing in China: barriers and drivers of adoption.European journal of human genetics : EJHG · 2026Article
- How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.Journal of community genetics · 2024Article
- Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Preferences of the Public for Sharing Health Data: Discrete Choice Experiment.JMIR medical informatics · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study.Circulation. Genomic and precision medicine · 2019Article
- Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants.Journal of empirical research on human research ethics : JERHREArticle
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThis study aims to determine research participants' preferences for receiving genetic risk information when participating in a scientific study that uses genome sequencing.
methodsA discrete choice experiment questionnaire was sent to 650 research participants (response rate 60.5%). Four attributes were selected for the questionnaire: type of disease, disease penetrance probability, preventive opportunity, and effectiveness of the preventive measure. Panel mixed logit models were used to determine attribute level estimates and the heterogeneity in preferences. Relative importance of the attribute and the predicted uptake for different information scenarios were calculated from the estimates. In addition, this study estimates predicted uptake for receiving genetic risk information in different scenarios.
resultsAll characteristics influenced research participants' willingness to receive genetic risk information. The most important characteristic was the effectiveness of the preventive opportunity. Predicted uptake ranged between 28% and 98% depending on what preventive opportunities and levels of effectiveness were presented.
conclusionInformation about an effective preventive measure was most important for participants. They valued that attribute twice as much as the other attributes. Therefore, when there is an effective preventive measure, risk communication can be less concerned with the magnitude of the probability of developing disease.
Indexed as
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30992550What 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.