SynthesisGenetics in medicine : official journal of the American College of Medical Genetics2016
Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.
Synthesis in Genetics in medicine : official journal of the American College of Medical Genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers, 3 of them syntheses that pooled it.
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Who cites it
45 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
- 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
- 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
- Public attitudes toward cascade genetic screening in the United States.Health affairs scholar · 2026Article
- Learning about the genetic risk in my family: Preferences of Italian nurses.Journal of community genetics · 2026Article
- Relational Responsibility: Bringing the Wider Social Environment into the Analysis.Asian bioethics review · 2026Article
- "Choosing the main character": healthcare professionals' attitudes towards counselling patients about risk disclosure to relatives in the era of mainstream cancer genetic testing.Familial cancer · 2025Article
- "Would you want to know?" Questions of utility and responsibility in Italian laypersons' preferences about genetic risk communication.Journal of community genetics · 2025Article
- Navigating family dynamics and ethical considerations in genetic diagnosis of pulmonary arterial hypertension: insights from in-depth semi-structured interviews.ERJ open research · 2025Article
- Healthcare provider-mediated cascade testing of Lynch syndrome to at-risk family members: an interview study.Familial cancer · 2025Article
- Family Communication of Genetic Risk: What is it and Why does it Matter?Acta medica Philippina · 2025Article
- 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
- Genetic counseling in sickle cell disease: Insights from the Indian tribal population.Journal of community genetics · 2023Review
- Comparing the attitudes of physicians and non-physicians toward communicating a patient's BRCA1 mutation to a first-degree relative against a patient's wishes.Journal of community genetics · 2022Article
- 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
- Re-imagining 'the patient': Linked lives and lessons from genomic medicine.Social science & medicine (1982) · 2022Article
- "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.New genetics and society · 2022Article
- 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
- Patient and Family Preferences on Health System-Led Direct Contact for Cascade Screening.Journal of personalized medicine · 2021Article
- Review
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThe extent of the responsibility of health-care professionals (HCPs) to ensure that patients' relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.
methodsOur systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs' responsibility to relatives with respect to disclosure.
resultsHealth-care professionals generally felt a responsibility to patients' relatives but perceived a variety of reasons why it would be difficult to act on this responsibility. Public/patient views were more wide-ranging. Participants identified several competing and overlapping arguments for and against HCP disclosure: guidelines do not permit/mandate it, privacy, medical benefit, impact on family dynamics, quality of communication, and respecting autonomy.
conclusionWe argue that HCPs can sometimes share genetic information without breaching confidentiality and that they could factor into their considerations the potential harm to family dynamics of nondisclosure. However, we need more nuanced research about their responsibilities to relatives, particularly as genomic tests are used more frequently in clinical practice.Genet Med 18 4, 290-301.
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