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

Hdl Handle:
http://hdl.handle.net/10034/620519
Title:
Universal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: How women and staff contextualise experiences of expanded access
Authors:
Shipman, Hannah; Flynn, Samantha; MacDonald-Smith, Carey; Brenton, James; Crawford, Robin; Tischkowitz, Marc; Hulbert-Williams, Nicholas J.
Abstract:
Decreasing 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.
Citation:
Shipman, H, Flynn, S, MacDonald-Smith, C, Brenton, J, Crawford, R, Tischkowitz, M. & Hulbert-Williams N. J. (2017). Universal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: how women and staff contextualise experiences of expanded access. Journal of Genetic Counseling.
Journal:
Journal of Genetic Counseling
Publication Date:
24-May-2017
URI:
http://hdl.handle.net/10034/620519
DOI:
10.1007/s10897-017-0108-5
Type:
Article
Language:
en
Description:
The final publication is available at Springer via http://dx.doi.org/10.1007/s10897-017-0108-5
ISSN:
1059-7700
EISSN:
1573-3599
Appears in Collections:
Psychology

Full metadata record

DC FieldValue Language
dc.contributor.authorShipman, Hannahen
dc.contributor.authorFlynn, Samanthaen
dc.contributor.authorMacDonald-Smith, Careyen
dc.contributor.authorBrenton, Jamesen
dc.contributor.authorCrawford, Robinen
dc.contributor.authorTischkowitz, Marcen
dc.contributor.authorHulbert-Williams, Nicholas J.en
dc.date.accessioned2017-05-31T09:31:33Z-
dc.date.available2017-05-31T09:31:33Z-
dc.date.issued2017-05-24-
dc.identifier.citationShipman, H, Flynn, S, MacDonald-Smith, C, Brenton, J, Crawford, R, Tischkowitz, M. & Hulbert-Williams N. J. (2017). Universal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: how women and staff contextualise experiences of expanded access. Journal of Genetic Counseling.en
dc.identifier.issn1059-7700-
dc.identifier.doi10.1007/s10897-017-0108-5-
dc.identifier.urihttp://hdl.handle.net/10034/620519-
dc.descriptionThe final publication is available at Springer via http://dx.doi.org/10.1007/s10897-017-0108-5en
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.en
dc.language.isoenen
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/en
dc.subjectBRCA1en
dc.subjectBRCA2en
dc.subjectGenetic counsellingen
dc.subjectovarian canceren
dc.subjectOncologyen
dc.subjectInterpretative phenomenological analysis (IPA)en
dc.titleUniversal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: How women and staff contextualise experiences of expanded accessen
dc.typeArticleen
dc.identifier.eissn1573-3599-
dc.identifier.journalJournal of Genetic Counselingen
dc.date.accepted2017-05-02-
or.grant.openaccessYesen
rioxxterms.funderTarget Ovarian Canceren
rioxxterms.identifier.projectN/Aen
rioxxterms.versionAMen
rioxxterms.licenseref.startdate2018-05-24-
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