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Article: Universal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: how women and staff contextualize experiences of expanded access

TitleUniversal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: how women and staff contextualize experiences of expanded access
Authors
KeywordsBRCA1
BRCA2
Genetic counseling
Interpretive phenomenological analysis (IPA)
Oncology
Ovarian cancer
UK
Issue Date2017
PublisherSpringer New York LLC. The Journal's web site is located at http://springerlink.metapress.com/openurl.asp?genre=journal&issn=1059-7700
Citation
Journal of Genetic Counseling, 2017, v. 26 n. 6, p. 1280-1291 How to Cite?
AbstractDecreasing costs of genetic testing and advances in treatment for women with cancer with germline BRCA1/BRCA2 mutations have heralded more inclusive genetic testing programs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study, investigates the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (universal genetic testing or UGT). Study participants and staff were interviewed to: (i) assess the impact of UGT (ii) integrate patients' and staff perspectives in the development of new UGT programs. Semi-structured interviews were conducted with twelve GTEOC Study participants and five members of staff involved in recruiting them. The transcripts were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. There are two super-ordinate themes: motivations and influences around offers of genetic testing and impacts of genetic testing in ovarian cancer patients. A major finding is that genetic testing is contextualized within the broader experiences of the women; the impact of UGT was minimized in comparison with the ovarian cancer diagnosis. Women who consent to UGT are motivated by altruism and by their relatives' influence, whilst those who decline are often considered overwhelmed or fearful. Those without a genetic mutation are usually reassured by this result, whilst those with a genetic mutation must negotiate new uncertainties and responsibilities towards their families. Our findings suggest that UGT in this context is generally acceptable to women. However, the period shortly after diagnosis is a sensitive time and some women are emotionally overburdened. UGT is considered a 'family affair' and staff must acknowledge this.
Persistent Identifierhttp://hdl.handle.net/10722/246918
ISSN
2023 Impact Factor: 1.9
2023 SCImago Journal Rankings: 0.917
ISI Accession Number ID

 

DC FieldValueLanguage
dc.contributor.authorShipman, HE-
dc.contributor.authorFlynn, S-
dc.contributor.authorMacDonald-Smith, CF-
dc.contributor.authorBrenton, J-
dc.contributor.authorCrawford, R-
dc.contributor.authorTischkowitz, M-
dc.contributor.authorHulbert-Williams, N-
dc.date.accessioned2017-10-18T08:19:22Z-
dc.date.available2017-10-18T08:19:22Z-
dc.date.issued2017-
dc.identifier.citationJournal of Genetic Counseling, 2017, v. 26 n. 6, p. 1280-1291-
dc.identifier.issn1059-7700-
dc.identifier.urihttp://hdl.handle.net/10722/246918-
dc.description.abstractDecreasing costs of genetic testing and advances in treatment for women with cancer with germline BRCA1/BRCA2 mutations have heralded more inclusive genetic testing programs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study, investigates the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (universal genetic testing or UGT). Study participants and staff were interviewed to: (i) assess the impact of UGT (ii) integrate patients' and staff perspectives in the development of new UGT programs. Semi-structured interviews were conducted with twelve GTEOC Study participants and five members of staff involved in recruiting them. The transcripts were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. There are two super-ordinate themes: motivations and influences around offers of genetic testing and impacts of genetic testing in ovarian cancer patients. A major finding is that genetic testing is contextualized within the broader experiences of the women; the impact of UGT was minimized in comparison with the ovarian cancer diagnosis. Women who consent to UGT are motivated by altruism and by their relatives' influence, whilst those who decline are often considered overwhelmed or fearful. Those without a genetic mutation are usually reassured by this result, whilst those with a genetic mutation must negotiate new uncertainties and responsibilities towards their families. Our findings suggest that UGT in this context is generally acceptable to women. However, the period shortly after diagnosis is a sensitive time and some women are emotionally overburdened. UGT is considered a 'family affair' and staff must acknowledge this.-
dc.languageeng-
dc.publisherSpringer New York LLC. The Journal's web site is located at http://springerlink.metapress.com/openurl.asp?genre=journal&issn=1059-7700-
dc.relation.ispartofJournal of Genetic Counseling-
dc.rightsThe final publication is available at Springer via http://dx.doi.org/10.1007/s10897-017-0108-5-
dc.subjectBRCA1-
dc.subjectBRCA2-
dc.subjectGenetic counseling-
dc.subjectInterpretive phenomenological analysis (IPA)-
dc.subjectOncology-
dc.subjectOvarian cancer-
dc.subjectUK-
dc.titleUniversal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: how women and staff contextualize experiences of expanded access-
dc.typeArticle-
dc.identifier.emailShipman, HE: shipmanh@hku.hk-
dc.description.naturepostprint-
dc.identifier.doi10.1007/s10897-017-0108-5-
dc.identifier.scopuseid_2-s2.0-85019631877-
dc.identifier.hkuros279707-
dc.identifier.volume26-
dc.identifier.issue6-
dc.identifier.spage1280-
dc.identifier.epage1291-
dc.identifier.isiWOS:000414596700011-
dc.publisher.placeUnited States-
dc.identifier.issnl1059-7700-

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