ArticleJournal of community genetics2013
Intrafamilial disclosure of risk for hereditary breast and ovarian cancer: points to consider.
Article in Journal of community genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed, 3 syntheses or guidelines pooled it, 34 citations in OpenAlex.
- A systematic review of theory-informed strategies used in interventions fostering family genetic risk communication.Patient education and counseling · 2022Pooled 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
- How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.European journal of human genetics : EJHG · 2016Pooled it
- The families SHARE project: novel insights on recruiting and engaging Black men in a community-based genomic education program.BMC public health · 2025Article
- Genomic findings with familial implications: agenda setting in light of mainstreaming.Open research Europe · 2025Article
- Digital clinical empathy in a live chat: multiple findings from a formative qualitative study and usability tests.BMC health services research · 2024Article
- Pakistani healthcare professionals' perceptions of communication with patients and their relatives about hereditary breast cancer: a qualitative study in a LMIC.Journal of community genetics · 2023Article
- Examining the uptake of predictive BRCA testing in the UK; findings and implications.European journal of human genetics : EJHG · 2021Article
- Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers.Patient education and counseling · 2021Article
- Intrafamilial communication of hereditary breast and ovarian cancer genetic information in Italian women: towards a personalised approach.European journal of human genetics : EJHG · 2021Article
- Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Racial differences in family health history knowledge of type 2 diabetes: exploring the role of interpersonal mechanisms.Translational behavioral medicine · 2018Article
- Evaluation of the Families SHARE workbook: an educational tool outlining disease risk and healthy guidelines to reduce risk of heart disease, diabetes, breast cancer and colorectal cancer.BMC public health · 2015Article
- Funding considerations for the disclosure of genetic incidental findings in biobank research.Clinical genetics · 2013Review
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 at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The primary goal of breast and ovarian cancer screening is to minimize the cases of advanced disease and therefore its mortality rate. For hereditary breast and ovarian cancer, one method to reach this goal is to disseminate genetic risk information among family members. However, experience tells us that this information does not always reach family members in a timely manner, if at all. There are many moving parts to a decision to disclose genetic risk information within a family, and the lack of detail and cohesion in current guidelines do a disservice to hereditary breast cancer prevention. Utilizing legal, medical, and policy databases for literature, case law and policy documents relating to communication of genetic test results within families, as well as a consultative process with representative stakeholders, a points to consider has been developed to address a number of issues that might impact the ability and willingness of patients to inform family members of genetic risk. These include: what is "genetic information"; who is the "family"; why should patients inform their family members; and how should health professionals be involved in this process? This represents only an initial step towards fostering better communication within families. Additional research is needed to determine the best methods for encouraging this communication and motivations for disclosing or not and to promote the development of a solution, considering the complexity of human relationships and the probabilistic nature of genetic information.
Identifiers
What OpenQuestion holds
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.