ArticleJournal of genetic counseling2022
Do research participants share genomic screening results with family members?
Article in Journal of genetic counseling, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
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
18 citing papers in PubMed, 26 citations in OpenAlex.
- An electronic review of clinical outcomes after return of actionable genetic research results from a health system research biobank.European journal of medical genetics · 2025Trial
- Perceived usefulness of online videos for hereditary breast cancer communication in Japan: Patient and provider perspectives.Public health in practice (Oxford, England) · 2026Article
- Adapting mainstreaming genetic education and clinical communication materials for cancer patients of varying backgrounds.Patient education and counseling · 2026Article
- Older research participants are motivated to receive genetic results for the benefit of younger relatives.European journal of human genetics : EJHG · 2026Article
- Impact of the American Society of Breast Surgeons' Guidelines on Genetic Testing and Contralateral Prophylactic Mastectomy Rates.Annals of surgical oncology · 2025Article
- Impact of a Genetic Diagnosis for a Child's Autism on Parental Perceptions.Journal of autism and developmental disorders · 2025Article
- Familial communication and cascade testing following elective genomic testing.Journal of genetic counseling · 2025Article
- Engaging adolescents and young adults in decisions about return of genomic research results: study protocol for a mixed-methods longitudinal clinical trial protocol.BMC medical informatics and decision making · 2024Article
- Nephrologists' Views on a Workflow for Returning Genetic Results to Research Participants.Kidney international reports · 2024Article
- Applying the framework for developing and evaluating complex interventions to increase family communication about hereditary cancer.PEC innovation · 2023Article
- Most people share genetic test results with relatives even if the findings are normal: Family communication in a diverse population.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM).European journal of human genetics : EJHG · 2023Review
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- Engaging Adolescents and Young Adults in Decisions About Return of Genomic Research Results: a mixed-methods longitudinal clinical trial protocol.Research square · 2023Article
- What patients want to know about genetic testing for kidney disease.Frontiers in medicine · 2023Article
- A pragmatic clinical trial of cascade testing for familial hypercholesterolemia.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Understanding the Patient Experience of Receiving Clinically Actionable Genetic Results from the MyCode Community Health Initiative, a Population-Based Genomic Screening Initiative.Journal of personalized medicine · 2022Article
- The Impact of Proband Indication for Genetic Testing on the Uptake of Cascade Testing Among Relatives.Frontiers in genetics · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
30 authors at 17 institutions in 2 countries.
Funding
Abstract
The public health impact of genomic screening can be enhanced by cascade testing. However, cascade testing depends on communication of results to family members. While the barriers and facilitators of family communication have been researched following clinical genetic testing, the factors impacting the dissemination of genomic screening results are unknown. Using the pragmatic Electronic Medical Records and Genomics Network-3 (eMERGE-3) study, we explored the reported sharing practices of participants who underwent genomic screening across the United States. Six eMERGE-3 sites returned genomic screening results for mostly dominant medically actionable disorders and surveyed adult participants regarding communication of results with first-degree relatives. Across the sites, 279 participants completed a 1-month and/or 6-month post-results survey. By 6 months, only 34% of the 156 respondents shared their results with all first-degree relatives and 4% did not share with any. Over a third (39%) first-degree relatives were not notified of the results. Half (53%) of participants who received their results from a genetics provider shared them with all first-degree relatives compared with 11% of participants who received their results from a non-genetics provider. The most frequent reasons for sharing were a feeling of obligation (72%) and that the information could help family members make medical decisions (72%). The most common reasons indicated for not sharing were that the family members were too young (38%), or they were not in contact (25%) or not close to them (25%). These data indicate that the professional returning the results may impact sharing patterns, suggesting that there is a need to continue to educate healthcare providers regarding approaches to facilitate sharing of genetic results within families. Finally, these data suggest that interventions to increase sharing may be universally effective regardless of the origin of the genetic result.
Indexed as
Identifiers
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.