Trial reportEuropean journal of human genetics : EJHG2016
Outcomes of a randomised controlled trial of a complex genetic counselling intervention to improve family communication.
Trial report in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 5 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
40 citing papers in PubMed, 5 syntheses or guidelines pooled it, 59 citations in OpenAlex.
- Proband-mediated interventions to increase disclosure of genetic risk in families with a BRCA or Lynch syndrome condition: a systematic review.European journal of human genetics : EJHG · 2023Pooled it
- A systematic review of theory-informed strategies used in interventions fostering family genetic risk communication.Patient education and counseling · 2022Pooled it
- The uptake of presymptomatic genetic testing in hereditary breast-ovarian cancer and Lynch syndrome: a systematic review of the literature and implications for clinical practice.Familial cancer · 2019Pooled it
- Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review.Journal of genetic counseling · 2017Pooled it
- A Systematic Review of Randomized Controlled Trials to Assess Outcomes of Genetic Counseling.Journal of genetic counseling · 2017Pooled it
- Genetic Cascade Screening for Familial Hypercholesterolemia: A Randomized Clinical Trial.JAMA network open · 2026Trial
- Facilitated cascade testing (FaCT): a randomized controlled trial.International journal of gynecological cancer : official journal of the International Gynecological Cancer Society · 2021Trial
- How women respond to uncertainty in the context of genetic screening: A qualitative analysis framed by the uncertainty tolerance model.Journal of genetic counseling · 2025Article
- Information needs persist after genetic counseling and testing for BRCA1/2 and Lynch Syndrome.Breast cancer research and treatment · 2024Article
- Cascade genetic testing: an underutilized pathway to equitable cancer care?Familial cancer · 2024Review
- Cascade genetic counseling and testing in hereditary syndromes: inherited cardiovascular disease as a model: a narrative review.Familial cancer · 2024Review
- Applying the framework for developing and evaluating complex interventions to increase family communication about hereditary cancer.PEC innovation · 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
- Development and early-stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient-driven approach.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Communal Coping as a Strategy to Enhance Family Engagement in Dilated Cardiomyopathy.Circulation. Genomic and precision medicine · 2022Review
- Do research participants share genomic screening results with family members?Journal of genetic counseling · 2022Article
- Parents' perspectives, experiences, and need for support when communicating with their children about the psychiatric manifestations of 22q11.2 deletion syndrome (22q11DS).Journal of community genetics · 2022Article
- Article
- 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
- Usefulness of mobile apps for communication of genetic test results to at-risk family members in a U.S. integrated health system: a qualitative approach from user-testing.Health policy and technology · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
When an inherited genetic condition is diagnosed in an individual it has implications for other family members. Privacy legislation and ethical considerations can restrict health professionals from communicating directly with other family members, and so it is frequently the responsibility of the first person in a family to receive the diagnosis (the proband) to share this news. Communication of genetic information is challenging and many at-risk family members remain unaware of important information that may be relevant to their or their children's health. We conducted a randomised controlled trial in six public hospitals to assess whether a specifically designed telephone counselling intervention improved family communication about a new genetic diagnosis. Ninety-five probands/parents of probands were recruited from genetics clinics and randomised to the intervention or control group. The primary outcome measure was the difference between the proportion of at-risk relatives who contacted genetics services for information and/or genetic testing. Audit of the family genetic file after 18 months revealed that 25.6% of intervention group relatives compared with 20.9% of control group relatives made contact with genetic services (adjusted odds ratio (OR) 1.30, 95% confidence interval 0.70-2.42, P=0.40). Although no major difference was detected overall between the intervention and control groups, there was more contact in the intervention group where the genetic condition conferred a high risk to offspring (adjusted OR 24.0, 95% confidence interval 3.4-168.5, P=0.001). The increasing sophistication and scope of genetic testing makes it imperative for health professionals to consider additional ways of supporting families in communicating genetic information.
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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.