ArticleHealth expectations : an international journal of public participation in health care and health policy2016
Public preferences for communicating personal genomic risk information: a focus group study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
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
22 citing papers in PubMed, 38 citations in OpenAlex.
- Trial
- The co-design, development, and preliminary evaluation of a comprehensive breast cancer risk report incorporating polygenic risk information.European journal of human genetics : EJHG · 2026Article
- Development and evaluation of patient-centred polygenic risk score reports for glaucoma screening.BMC medical genomics · 2025Article
- Impact of polygeNic risk score for glaucoma on psycHosocial ouTcomes (INSiGHT) study protocol.PloS one · 2024Article
- Patient understanding of pharmacogenomic test results in clinical care.Patient education and counseling · 2023Article
- Patient and provider perspectives on polygenic risk scores: implications for clinical reporting and utilization.Genome medicine · 2022Article
- Preferences for and acceptability of receiving pharmacogenomic results by mail: A focus group study with a primarily African-American cohort.Journal of genetic counseling · 2021Article
- A Focus Group Study of Perceptions of Genetic Risk Disclosure in Members of the Public in Sweden: "I'll Phone the Five Closest Ones, but What Happens to the Other Ten?"Journal of personalized medicine · 2021Article
- "Being proactive, not reactive": exploring perceptions of genetic testing among White, Latinx, and Pacific Islander Populations.Journal of community genetics · 2021Article
- A scoping review of social and behavioral science research to translate genomic discoveries into population health impact.Translational behavioral medicine · 2021Article
- The need for polygenic score reporting standards in evidence-based practice: lipid genetics use case.Current opinion in lipidology · 2021Review
- Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values.The patient · 2021Article
- Utilization of clinical genetic counseling among childhood and young adult cancer survivors in a registry trial.Journal of community genetics · 2020Article
- Implementation considerations for offering personal genomic risk information to the public: a qualitative study.BMC public health · 2020Article
- Illustrating Cancer Risk: Patient Risk Communication Preferences and Interest regarding a Novel BRCA1/2 Genetic Risk Modifier Test.Public health genomics · 2020Article
- Value-based genomic screening: exploring genomic screening for chronic diseases using triple value principles.BMC health services research · 2019Article
- High-risk women's risk perception after receiving personalized polygenic breast cancer risk information.Journal of community genetics · 2019Article
- Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk.Journal of genetic counseling · 2018Article
- Distress, uncertainty, and positive experiences associated with receiving information on personal genomic risk of melanoma.European journal of human genetics : EJHG · 2018Article
- Development and Evaluation of a Telephone Communication Protocol for the Delivery of Personalized Melanoma Genomic Risk to the General Population.Journal of genetic counseling · 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
7 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPersonalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies.
objectiveTo determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals.
designFocus groups, transcribed and analysed thematically.
participantsThirty-four participants from the public.
methodsParticipants were provided with, and invited to discuss, a hypothetical scenario giving an individual's personalized genomic risk of melanoma displayed in several graphical formats.
resultsParticipants preferred risk formats that were familiar and easy to understand, such as a 'double pie chart' and '100 person diagram' (pictograph). The 100 person diagram was considered persuasive because it humanized and personalized the risk information. People described the pie chart format as resembling bank data and food (such as cake and pizza). Participants thought that email, web-based platforms and postal mail were viable options for communicating genomic risk information. However, they felt that it was important that a health professional (either a genetic counsellor or 'informed' general practitioner) be available for discussion at the time of receiving the risk information, to minimize potential negative emotional responses and misunderstanding. Face-to-face or telephone delivery was preferred for delivery of high-risk results.
conclusionsThese public preferences for communication strategies for genomic risk information will help to guide translation of genome-based knowledge into improved population health.
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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.