ArticleAmerican journal of medical genetics. Part A2015
Enhancing genomic laboratory reports from the patients' view: A qualitative analysis.
Article in American journal of medical genetics. Part A, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 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
31 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pooled it
- The Patient in Precision Medicine: A Systematic Review Examining Evaluations of Patient-Facing Materials.Journal of healthcare engineering · 2018Pooled it
- Parent/caregiver needs during pediatric genome-wide sequencing: A scoping literature review.Journal of genetic counseling · 2026Article
- Advancing the science of genomic learning healthcare systems.Learning health systems · 2025Article
- Putting control into parents' hands: Parent experiences with a genomic results e-booklet.Journal of genetic counseling · 2025Article
- RareInsight simplifies the communication of genetic results for rare disease patients.Scientific reports · 2025Article
- Development and evaluation of patient-centred polygenic risk score reports for glaucoma screening.BMC medical genomics · 2025Article
- Improving the communication of multifactorial cancer risk assessment results for different audiences: a co-design process.Journal of community genetics · 2024Article
- Investigating the presentation of uncertainty in an icon array: A randomized trial.PEC innovation · 2022Article
- Developing video education materials for the return of genomic test results to parents and adolescents.PEC innovation · 2022Article
- Co-design, implementation, and evaluation of plain language genomic test reports.NPJ genomic medicine · 2022Article
- Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions.Medical humanities · 2022Article
- Lay understandings of drug-gene interactions: The right medication, the right dose, at the right time, but what are the right words?Clinical and translational science · 2022Article
- Design and user experience testing of a polygenic score report: a qualitative study of prospective users.BMC medical genomics · 2021Review
- "Who Doesn't Like Receiving Good News?" Perspectives of Individuals Who Received Genomic Screening Results by Mail.Journal of personalized medicine · 2021Article
- Recommendations for designing genetic test reports to be understood by patients and non-specialists.European journal of human genetics : EJHG · 2020Article
- Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network.Journal of personalized medicine · 2020Article
- A comparison of genomic laboratory reports and observations that may enhance their clinical utility for providers and patients.Molecular genetics & genomic medicine · 2019Article
- Hereditary cancer gene panel test reports: wide heterogeneity suggests need for standardization.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- Empowering genomic medicine by establishing critical sequencing result data flows: the eMERGE example.Journal of the American Medical Informatics Association : JAMIA · 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
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The purpose of this study was to develop a family genomic laboratory report designed to communicate genome sequencing results to parents of children who were participating in a whole genome sequencing clinical research study. Semi-structured interviews were conducted with parents of children who participated in a whole genome sequencing clinical research study to address the elements, language and format of a sample family-directed genome laboratory report. The qualitative interviews were followed by two focus groups aimed at evaluating example presentations of information about prognosis and next steps related to the whole genome sequencing result. Three themes emerged from the qualitative data: (i) Parents described a continual search for valid information and resources regarding their child's condition, a need that prior reports did not meet for parents; (ii) Parents believed that the Family Report would help facilitate communication with physicians and family members; and (iii) Parents identified specific items they appreciated in a genomics Family Report: simplicity of language, logical flow, visual appeal, information on what to expect in the future and recommended next steps. Parents affirmed their desire for a family genomic results report designed for their use and reference. They articulated the need for clear, easy to understand language that provided information with temporal detail and specific recommendations regarding relevant findings consistent with that available to clinicians.
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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.