SynthesisGenetics in medicine : official journal of the American College of Medical Genetics2021
Disclosure of genetic information to family members: a systematic review of normative documents.
Synthesis in Genetics in medicine : official journal of the American College of Medical Genetics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.
What it found
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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.
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Who cites it
23 citing papers in PubMed.
- Family-oriented support in genetic counselling: a scoping review of clinical practice and psychotherapeutic interventions.European journal of human genetics : EJHG · 2026Review
- Protecting the health of donor-conceived offspring.Familial cancer · 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
- Cascade counselling and testing. Recommendations of the European Society of Human Genetics.European journal of human genetics : EJHG · 2026Article
- Article
- Early considerations for village-in-a-dish platform: a multidisciplinary perspective.Frontiers in bioengineering and biotechnology · 2026Review
- Ethically Integrating Genomics in Primary Care: An Invitation to Share Implementation Best Practices.Mayo Clinic proceedings · 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
- Stakeholders' experiences and perspectives of reproductive genetic carrier screening in gamete donation: a scoping review.Human reproduction (Oxford, England) · 2025Article
- Addressing family communication in genetic counseling: A scoping review of process studies.Journal of genetic counseling · 2025Article
- Empowering human research ethics committees to review genomics applications: evaluating the utility of a custom online education resource.European journal of human genetics : EJHG · 2025Article
- Ethical and Psychosocial Issues Associated with Genetic Testing for Hereditary Tumor Predisposition Syndromes.Healthcare (Basel, Switzerland) · 2025Review
- Genomic findings with familial implications: agenda setting in light of mainstreaming.Open research Europe · 2025Article
- Who has the responsibility to inform relatives at risk of hereditary cancer? A population-based survey in Sweden.BMJ open · 2024Article
- Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda.European journal of human genetics : EJHG · 2024Review
- Clinician perspectives on policy approaches to genetic risk disclosure in families.Familial cancer · 2024Article
- From collected stamps to hair locks: ethical and legal implications of testing DNA found on privately owned family artifacts.Human genetics · 2023Article
- 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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeFindings from genomic sequencing can have important implications for patients and family members. Yet, when a patient does not consent to the disclosure of genetic information to relatives, it is unclear how health-care professionals (HCPs) should balance their responsibilities toward patients and their family members and whether breaches in confidentiality are warranted.
methodsWe conducted a systematic review of normative documents to understand how HCPs should discuss and facilitate family disclosure, and what should be done in cases where the patient does not consent to disclosure.
resultsWe analyzed 35 documents from advisory committees at the national, European, and international level. We identified discrepancies regarding the recommended role of HCPs in disclosure. While almost all normative documents supported the disclosure of genetic information without patient consent in limited conditions, the conditions for disclosure were often not well defined. Documents provided varying degrees of information regarding what actions HCPs must take in such situations.
conclusionOur findings present concerns regarding the ability of these normative documents to guide HCPs' decision making around the disclosure of genetic information to family members. Clearer guidance outlining the responsibilities and acceptability of disclosure is necessary to facilitate disclosure of genetic information to family members.
Indexed as
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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.