ArticleFamilial cancer2011
Sharing genetic risk with next generation: mutation-positive parents' communication with their offspring in Lynch Syndrome.
Article in Familial cancer, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 5 of them syntheses that pooled it.
What it found
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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.
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Who cites it
37 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- 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
- Cascade Testing for Hereditary Cancer Syndromes: Should We Move Toward Direct Relative Contact? A Systematic Review and Meta-Analysis.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2022Pooled it
- Parent-Child Communication and Reproductive Considerations in Families with Genetic Cancer Predisposition Syndromes: A Systematic Review.Journal of adolescent and young adult oncology · 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
- Guideline
- Family Ties: The Role of Family Context in Family Health History Communication About Cancer.Journal of health communication · 2016Trial
- Uptake of cascade testing and the factors affecting its implementation among patients in Japan with Lynch syndrome.Journal of human genetics · 2026Article
- Why is family disclosure of genetic risk so difficult? A collaborative analysis of 685 rare-disease patient experiences.European journal of human genetics : EJHG · 2026Article
- Article
- Family Communication of Genetic Risk: What is it and Why does it Matter?Acta medica Philippina · 2025Article
- Cascade genetic testing for hereditary cancer syndromes: a review of barriers and breakthroughs.Familial cancer · 2024Review
- Do people with hereditary cancer syndromes inform their at-risk relatives? A systematic review and meta-analysis.PEC innovation · 2023Article
- What would I do? Perspectives on the factors underlying Lynch syndrome genetic testing and results sharing decisions for high-risk colorectal cancer patients.Psycho-oncology · 2022Article
- "Left in limbo": Exploring how patients with colorectal cancer interpret and respond to a suspected Lynch syndrome diagnosis.Hereditary cancer in clinical practice · 2021Article
- Shame and STIs: An Exploration of Emerging Adult Students' Felt Shame and Stigma towards Getting Tested for and Disclosing Sexually Transmitted Infections.International journal of environmental research and public health · 2021Article
- Room for improvement: One third of Lynch syndrome patients presenting for genetic testing in a highly specialised centre in Stockholm already have cancer.Hereditary cancer in clinical practice · 2021Article
- Whether, when, and how to communicate genetic risk to minors: 'I wanted more information but I think they were scared I couldn't handle it'.Journal of genetic counseling · 2021Article
- Stakeholder Perspectives on Overcoming Barriers to Cascade Testing in Lynch Syndrome: A Qualitative Study.Cancer prevention research (Philadelphia, Pa.) · 2020Article
- The structure of emotional support networks in families affected by Lynch syndrome.Network science (Cambridge University Press) · 2020Article
- Attitudes towards genetic testing and information: does parenthood shape the views?Journal of community genetics · 2020Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Identification of hereditary predisposition to cancer has limited significance if not followed by efficient cancer prevention. The responsibility of informing offspring about genetic risk often falls to the parents. We systematically investigated how parents with Lynch Syndrome share knowledge of genetic risk with their offspring, challenges in the communication process and wish for professional support. Of all known mutation carriers over age 40 (n = 337) in 102 Finnish Lynch Syndrome families, 86% completed a self-reported questionnaire; 248 of them (86%) had children. Of the 248 parents, 87% reported disclosure and 13% nondisclosure. Reasons for nondisclosure were mainly the young age of offspring, socially distant relationships, or feeling of difficulty in discussing the topic. Men reported significantly more often disclosure with a support person (spouse etc.) (P < 0.001). The most difficult communication aspect was discussing children's cancer risk. Of the 191 firstborn adult children informed, 69% had taken the predictive genetic test. Every third parent suggested that health professionals should be involved in passing on the information and that a family appointment at the genetic clinic should be organized at the time of disclosure. Nearly all parents had informed their adult offspring about the genetic risk and possibility of genetic testing, but almost one-third were unsure of how their offspring had used the information. The challenge is to improve the communication processes, so that all offspring would get the information important for their health care, and parents would get the professional support desired at disclosure.
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