ArticleEuropean journal of human genetics : EJHG2018
Genetic diseases and information to relatives: practical and ethical issues for professionals after introduction of a legal framework in France.
Article in European journal of human genetics : EJHG, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 2 of them syntheses that pooled it.
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Who cites it
15 citing papers in PubMed, 2 syntheses or guidelines pooled 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
- Cascade counselling and testing. Recommendations of the European Society of Human Genetics.European journal of human genetics : EJHG · 2026Article
- Article
- 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
- Clinician perspectives on policy approaches to genetic risk disclosure in families.Familial cancer · 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
- How do non-geneticist physicians deal with genetic tests? A qualitative analysis.European journal of human genetics : EJHG · 2022Article
- A genetic researcher's devil's dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?BMC medical ethics · 2021Article
- Healthcare professionals' responsibility for informing relatives at risk of hereditary disease.Journal of medical ethics · 2020Article
- Article
- Disclosure to genetic relatives without consent - Australian genetic professionals' awareness of the health privacy law.BMC medical ethics · 2020Article
- Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden.Hereditary cancer in clinical practice · 2020Article
- Challenges and strategies proposed by genetic health professionals to assist with family communication.European journal of human genetics : EJHG · 2019Article
Corrections and comments
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Authors and funding
2 authors.
Funding
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Abstract
Health professionals have a role to play in assisting patients to communicate genetic information to their relatives. In France, a specific unique legal framework has been implemented concerning this issue. We questioned professionals about their practice and how it has evolved in this new frame. The French law has opted to lay responsibility for disclosure on the person concerned by a positive test result, without totally excluding some responsibility on the part of the professionals involved, in the information to be disclosed and in the transmission of the information if a patient refuses to do it themselves (indirect disclosure). We designed and validated an online survey to be sent out to healthcare professionals to explore their practice and how they went about implementing the legal provisions. We also sought to determine how healthcare professionals dealt with a patient's refusal to disclose information to their relatives, and whether the legal framework was helpful. We carried out a statistical analysis of the responses to questionnaires to interpret the results by professional category, field of medicine and genetic disorder. The results show that professionals agreed on the relevance of disclosure to relatives. However, they show a range of practices and varying representations of the genetic issue in the framework of disclosure to relatives according to their medical field, their role in the health system and their own interpretations. They indicated a lack of resources, raised some ethical issues and put forward some arguments against contacting relatives themselves.
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