ArticleGenetic testing2005
Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information.
Article in Genetic testing, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 3 of them syntheses that pooled it.
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Who cites it
35 citing papers in PubMed, 3 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
- Barriers and facilitators for cascade testing in genetic conditions: a systematic review.European journal of human genetics : EJHG · 2020Pooled it
- Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Pooled it
- What Makes Families SHARE: The Family Communication Environments of Disseminators and Non-Disseminators of Family Cancer History.Public health genomics · 2026Article
- Lynch syndrome in Mexican-Mestizo families: Genotype, phenotypes, and challenges in cascade testing among relatives at risk.Heliyon · 2024Article
- Direct notification by health professionals of relatives at-risk of genetic conditions (with patient consent): views of the Australian public.European journal of human genetics : EJHG · 2024Article
- Development and initial testing of a multi-stakeholder intervention for Lynch syndrome cascade screening: an intervention mapping approach.BMC health services research · 2022Article
- Patient and Family Preferences on Health System-Led Direct Contact for Cascade Screening.Journal of personalized medicine · 2021Article
- Article
- The structure of emotional support networks in families affected by Lynch syndrome.Network science (Cambridge University Press) · 2020Article
- How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.Journal of genetic counseling · 2020Article
- Article
- "It would be so much easier": health system-led genetic risk notification-feasibility and acceptability of cascade screening in an integrated system.Journal of community genetics · 2019Article
- Human Immunodeficiency Virus Transmission Risk in Analytical Treatment Interruption Studies: Relational Factors and Moral Responsibility.The Journal of infectious diseases · 2019Article
- Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children's genetic health literacy and psychosocial adjustment.Translational behavioral medicine · 2019Article
- 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
- Recontacting Patients with Updated Genetic Testing Recommendations for Medullary Thyroid Carcinoma and Pheochromocytoma or Paraganglioma.Annals of surgical oncology · 2018Article
- Alerting relatives about heritable risks: the limits of confidentiality.BMJ (Clinical research ed.) · 2018Article
- Cancer screening behaviors and risk perceptions among family members of colorectal cancer patients with unexplained mismatch repair deficiency.Familial cancer · 2017Article
- Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.BMJ open · 2017Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
This study's aim was to ascertain hereditary nonpolyposis colorectal cancer (HNPCC) families' views on the duty to inform with particular focus on the role of health professionals in disseminating familial genetic information. Eighty members of 16 families with a clinical or molecular diagnosis of HNPCC completed qualitative interviews regarding views on family members' right to know and who should disseminate familial genetic information. Most indicated that everyone in the family should know about the presence of a mutation in the family, with family members themselves being the preferable informant, supported by health professionals who were seen as helpful in overcoming barriers. All but one respondent indicated that if a parent did not test and presumably did not inform his/her child about the family mutation, the child should be informed by other family members or by a health professional. Many were attuned to confidentiality concerns, but judged them to be outweighed by the importance of family members knowing about the mutation and undertaking proper surveillance. Respondents were more private about the disclosure of individual results to other family members, clearly distinguishing personal results from familial genetic information. These families with a hereditary colon cancer syndrome favor open sharing of genetic information within the family, and desire the supportive involvement of health care professionals in disseminating genetic information.
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