ArticleHealth expectations : an international journal of public participation in health care and health policy2008
BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience.
Article in Health expectations : an international journal of public participation in health care and health policy, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 of them syntheses that pooled it.
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Who cites it
24 citing papers in PubMed, 2 syntheses or guidelines pooled it, 51 citations in OpenAlex.
- Demographic Characteristics Associated With Perceptions of Personal Utility in Genetic and Genomic Testing: A Systematic Review.JAMA network open · 2023Pooled it
- Personal utility in genomic testing: a systematic literature review.European journal of human genetics : EJHG · 2017Pooled it
- The use of heuristics in genetic testing decision-making: A qualitative interview study.PloS one · 2021Trial
- "Who Doesn't Like Receiving Good News?" Perspectives of Individuals Who Received Genomic Screening Results by Mail.Journal of personalized medicine · 2021Article
- Survey of primary care physicians' views about breast and ovarian cancer screening for true BRCA1/2 non-carriers.Journal of community genetics · 2020Article
- Article
- Prospective Decision Analysis Study of Clinical Genomic Testing in Metastatic Breast Cancer: Impact on Outcomes and Patient Perceptions.JCO precision oncology · 2019Article
- Factors Influencing Clinical Follow-Up for Individuals with a Personal History of Breast and/or Ovarian Cancer and Previous Uninformative BRCA1 and BRCA2 Testing.Journal of genetic counseling · 2018Article
- Self-Regulation Principles Underlying Risk Perception and Decision Making within the Context of Genomic Testing.Social and personality psychology compass · 2017Article
- Clinical follow-up and breast and ovarian cancer screening of true BRCA1/2 noncarriers: a qualitative investigation.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis.Journal of community genetics · 2016Article
- Intuition versus cognition: a qualitative exploration of how women understand and manage their increased breast cancer risk.Journal of behavioral medicine · 2015Article
- Specific psychosocial issues of individuals undergoing genetic counseling for cancer - a literature review.Journal of genetic counseling · 2014Review
- Is the psychological impact of genetic testing moderated by support and sharing of test results to family and friends?Familial cancer · 2013Article
- Experience of BRCA1/2 mutation-negative young women from families with hereditary breast and ovarian cancer: a qualitative study.Hereditary cancer in clinical practice · 2013Article
- Family communication following BRCA1/2 genetic testing: a close look at the process.Journal of genetic counseling · 2013Article
- Management of genetic syndromes predisposing to gynecologic cancers.Current treatment options in oncology · 2013Review
- Families' experience of oncogenetic counselling: accounts from a heterogeneous hereditary cancer risk population.Familial cancer · 2012Article
- French women's breast self-examination practices with time after undergoing BRCA1/2 genetic testing.Familial cancer · 2012Article
- Communicating genetic risk information within families: a review.Familial cancer · 2010Review
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Authors and funding
6 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundWhen women from families with a known BRCA1 or BRCA2 mutation test negative for the family mutation, it is assumed that they will transition their personal cancer risk perception from high to average risk. However, there are scant data regarding the experience of mutation-negative women after genetic testing disclosure, particularly related to the shift of risk perception from assumed mutation-positive to actual mutation-negative. This study was designed to explore cancer risk perception and the experience of being a mutation-negative woman within a known BRCA1/2 mutation-positive family.
methodsWe employed a qualitative descriptive design and convened a sample of 13 women who contributed in-depth, semi-structured telephone interviews (audio-recorded and transcribed verbatim) and performed qualitative content analysis with NVivo 2.0 software.
resultsSix major content areas emerged from interview data: (i) rationale for initial involvement in the breast imaging study, (ii) rationale for continued participation, (iii) experience of living in a multiple-case family, (iv) risk perception: the personal meaning of mutation-negative status, (v) opinions regarding cancer aetiology and (vi) communication patterns between mutation-negative and mutation-positive family members.
conclusionsLiving in a hereditary breast and ovarian cancer family is a complex experience that affects cognitive, emotional and social functioning. Our findings indicate that mutation-negative women may have unmet psychosocial needs that must be addressed by health-care professionals, particularly in the primary-care setting following genetic disclosure of a potentially reassuring result regarding their lack of the very high cancer risks associated with BRCA1/2 mutations.
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