GuidelineFamilial cancer2013
Informing family members of individuals with Lynch syndrome: a guideline for clinical geneticists.
Guideline in Familial cancer, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 3 of them syntheses that pooled it.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
29 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Public perspectives on healthcare professional-directed communication of hereditary genetic risks: a mixed-method systematic review.European journal of human genetics : EJHG · 2026Pooled it
- Disclosure of genetic information to family members: a systematic review of normative documents.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled 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
- Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.Journal of genetic counseling · 2016Trial
- Barriers and facilitators of adherence to cancer prevention in Lynch Syndrome: an integrative review.Hereditary cancer in clinical practice · 2026Review
- Learning about the genetic risk in my family: Preferences of Italian nurses.Journal of community genetics · 2026Article
- "Would you want to know?" Questions of utility and responsibility in Italian laypersons' preferences about genetic risk communication.Journal of community genetics · 2025Article
- Health professionals contacting patients' relatives directly about genetic risk (with patient consent): current clinical practice and perspectives.European journal of human genetics : EJHG · 2025Article
- Genomic findings with familial implications: agenda setting in light of mainstreaming.Open research Europe · 2025Article
- Cascade genetic testing in hereditary cancer: exploring the boundaries of the Italian legal framework.Familial cancer · 2024Article
- Exploring family communication preferences in hereditary breast and ovarian cancer and Lynch syndrome: a national Canadian survey.Journal of community genetics · 2024Article
- Cascade testing in Italian Hereditary Breast Ovarian Cancer families: a missed opportunity for cancer prevention?Familial cancer · 2024Article
- Psychosocial barriers and facilitators for cascade genetic testing in hereditary breast and ovarian cancer: a scoping review.Familial cancer · 2024Article
- Clinician perspectives on policy approaches to genetic risk disclosure in families.Familial cancer · 2024Article
- National Experiences from 30 Years of Provider-Mediated Cascade Testing in Lynch Syndrome Families-The Danish Model.Cancers · 2024Article
- The Communication Chain of Genetic Risk: Analyses of Narrative Data Exploring Proband-Provider and Proband-Family Communication in Hereditary Breast and Ovarian Cancer.Journal of personalized medicine · 2022Article
- Long-Term Follow-Up Study on the Uptake of Genetic Counseling and Predictive DNA Testing in Inherited Cardiac Conditions.Circulation. Genomic and precision medicine · 2020Article
- How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.Journal of genetic counseling · 2020Article
- Uptake and predictors of colonoscopy use in family members not participating in cascade genetic testing for Lynch syndrome.Scientific reports · 2020Article
- Worldwide Practice Patterns in Lynch Syndrome Diagnosis and Management, Based on Data From the International Mismatch Repair Consortium.Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association · 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
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The diagnosis of Lynch syndrome can lead to the prevention of colorectal cancer through periodic colonoscopies and removal of premalignant lesions in susceptible individuals. Therefore, predisposed individuals identified by mutation analysis are advised to inform their at-risk relatives about the options of predictive DNA testing and preventive measures. However, it has now been established that more than half of these relatives do not receive the necessary information. Barriers in conveying information include family communication problems and variable attitudes and practice among clinical geneticists. In this complex field, both medical, psychological, ethical and juridical aspects deserve consideration. Here we summarize the development of a revised guideline for clinical geneticists that allows a more active role of the geneticist, aimed at improving procedures to inform family members in Lynch syndrome and other hereditary and familial cancer syndromes.
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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.