ArticleEuropean journal of human genetics : EJHG2020
Recommendations for designing genetic test reports to be understood by patients and non-specialists.
Article in European journal of human genetics : EJHG, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers.
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Who cites it
30 citing papers in PubMed, 57 citations in OpenAlex.
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- Quality and consistency of genetic newborn screening reports in China: insights from a multi-laboratory analysis using simulated samples.BMC pediatrics · 2026Article
- Adapting mainstreaming genetic education and clinical communication materials for cancer patients of varying backgrounds.Patient education and counseling · 2026Article
- Genomic risk model to implement precision prostate cancer screening in clinical care: the ProGRESS study.Nature cancer · 2026Article
- An open-source clinical bioinformatics pipeline for real-world NGS implementation: translating genomic variants into actionable treatment strategies in oncology.Journal of translational medicine · 2026Article
- Genetic counselors' perspectives and experiences with workplace genetic testing: Results of a national survey.Genetics in medicine open · 2026Article
- Feasibility study of using the PREDICT kidney tool for patients with localised renal cell carcinoma.BJUI compass · 2025Article
- Optimizing a Patient-Centered Report of Somatic and Germline Genetic Test Results.JCO precision oncology · 2025Article
- Primary Care Providers' Experiences With an Active Elective Genetic Testing Program.Health education & behavior : the official publication of the Society for Public Health Education · 2025Article
- Development and evaluation of patient-centred polygenic risk score reports for glaucoma screening.BMC medical genomics · 2025Article
- Patient and providers' perspectives on using the GUÍA digital tool to enhance genomic results disclosure.Genetics in medicine open · 2025Article
- Written communication of whole genome sequencing results in the NHS Genomic Medicine Service: a multi-centre service evaluation.European journal of human genetics : EJHG · 2024Article
- What do women want to see in a personalized breast cancer risk report? A qualitative study of Asian women of two countries.Journal of community genetics · 2024Article
- Improving the communication of multifactorial cancer risk assessment results for different audiences: a co-design process.Journal of community genetics · 2024Article
- Usability, Engagement, and Report Usefulness of Chatbot-Based Family Health History Data Collection: Mixed Methods Analysis.Journal of medical Internet research · 2024Article
- The use of precision diagnostics for monogenic diabetes: a systematic review and expert opinion.Communications medicine · 2023Article
- Ordering genetic testing by neurologists: points to consider.Journal of neurology · 2023Review
- Determinants of targeted cancer therapy use in community oncology practice: a qualitative study using the Theoretical Domains Framework and Rummler-Brache process mapping.Implementation science communications · 2023Article
- Involving patients and the public In sTatistIcal Analysis pLans (INITIAL): A delphi survey.PloS one · 2023Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
Patients and non-specialist healthcare professionals are increasingly expected to understand and interpret the results of genetic or genomic testing. These results are currently reported using a variety of templates, containing different amounts, levels, and layouts of information. We set out to establish a set of recommendations for communicating genetic test results to non-expert readers. We employed a qualitative-descriptive study design with user-centred design principles, including a mixture of in-person semi-structured interviews and online questionnaires with patients, healthcare professionals and the general public. The resulting recommendations and example template include providing at-a-glance comprehension of what the test results mean for the patient; suggested next steps; and details of further information and support. Separation and inclusion of technical methodological details enhances non-specialists' understanding, while retaining important information for specialists and the patients' records. The recommendations address the high-level needs of patients and their non-specialist clinicians when receiving genetic test results. These recommendations provide a solid foundation for the major content and structure of reports, and we recommend further engagement with patients and clinicians to tailor reports to specific types of test and results.
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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.