"It wasn't just for me": Motivations and implications of genetic testing for women at a low risk of hereditary breast and ovarian cancer syndrome.

Gill, G; Beard, C; Storey, K; Taylor, S; Sexton, A

"It wasn't just for me": Motivations and implications of genetic testing for women at a low risk of hereditary breast and ovarian cancer syndrome.

Gill, G Beard, C Storey, K Taylor, S Sexton, A

Permalink

Publisher:: WILEY
Publication Type:: Journal Article
Citation:: Psychooncology, 2020, 29, (8), pp. 1303-1311
Issue Date:: 2020-08

Closed Access

	Filename	Description	Size
	Psycho-Oncology - 2020 - Gill - It wasn t just for me Motivations and implications of genetic testing for women at a low.pdf	Published version	883.52 kB	Adobe PDF	View/Open

Copyright Clearance Process

Recently Added
In Progress
Closed Access

This item is closed access and not available.

Full metadata record

Field	Value	Language
dc.contributor.author	Gill, G
dc.contributor.author	Beard, C
dc.contributor.author	Storey, K
dc.contributor.author	Taylor, S
dc.contributor.author	Sexton, A https://orcid.org/0000-0001-8749-1639
dc.date.accessioned	2022-10-31T00:02:55Z
dc.date.available	2020-05-26
dc.date.available	2022-10-31T00:02:55Z
dc.date.issued	2020-08
dc.identifier.citation	Psychooncology, 2020, 29, (8), pp. 1303-1311
dc.identifier.issn	1057-9249
dc.identifier.issn	1099-1611
dc.identifier.uri	http://hdl.handle.net/10453/163000
dc.description.abstract	OBJECTIVE: Genetic testing for hereditary breast and ovarian cancer (HBOC) due to pathogenic variants in BRCA1 or BRCA2 is why most women present to familial cancer centers. Despite being assessed as low risk for HBOC, many women proceed with genetic testing. This study explored the genetic testing experiences of unaffected women at low risk of HBOC to clarify what motivates these women to have testing, and what are the implications of the results. METHODS: A qualitative approach was taken. Participants included women who had genetic testing for HBOC from 2016-2018 at the Parkville Familial Cancer Centre in Melbourne, Australia. In-depth, semi-structured interviews were conducted, and thematic analysis was undertaken on transcripts; transcripts were coded, codes were organized into a hierarchical system of categories/subcategories, and key themes were identified. RESULTS: Analysis of 19 transcripts identified five themes: family underpinned all motivators for HBOC genetic testing; health professionals were influential throughout the process; participants were planning for a positive result; results influenced screening-anxiety and frequency; and negative results gave participants relief in many different ways. The three participants with positive results reported feeling shocked at the results and empowered giving this information to family members. CONCLUSIONS: Women at low HBOC risk may be motivated to seek genetic testing, and access to this is increasingly offered through non-genetic health professionals. Professionals can support clients through genetic testing by recognizing familial experiences, providing accurate information, addressing risk perceptions, and understanding cancer anxiety felt by many women.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	WILEY
dc.relation.ispartof	Psychooncology
dc.relation.isbasedon	10.1002/pon.5436
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	1103 Clinical Sciences, 1112 Oncology and Carcinogenesis, 1701 Psychology
dc.subject.classification	Oncology & Carcinogenesis
dc.subject.mesh	Adult
dc.subject.mesh	Australia
dc.subject.mesh	BRCA1 Protein
dc.subject.mesh	Breast Neoplasms
dc.subject.mesh	Female
dc.subject.mesh	Genetic Predisposition to Disease
dc.subject.mesh	Genetic Testing
dc.subject.mesh	Hereditary Breast and Ovarian Cancer Syndrome
dc.subject.mesh	Humans
dc.subject.mesh	Middle Aged
dc.subject.mesh	Motivation
dc.subject.mesh	Patient Acceptance of Health Care
dc.subject.mesh	Risk Assessment
dc.subject.mesh	Humans
dc.subject.mesh	Breast Neoplasms
dc.subject.mesh	Genetic Predisposition to Disease
dc.subject.mesh	BRCA1 Protein
dc.subject.mesh	Risk Assessment
dc.subject.mesh	Motivation
dc.subject.mesh	Adult
dc.subject.mesh	Middle Aged
dc.subject.mesh	Patient Acceptance of Health Care
dc.subject.mesh	Australia
dc.subject.mesh	Female
dc.subject.mesh	Genetic Testing
dc.subject.mesh	Hereditary Breast and Ovarian Cancer Syndrome
dc.title	"It wasn't just for me": Motivations and implications of genetic testing for women at a low risk of hereditary breast and ovarian cancer syndrome.
dc.type	Journal Article
utslib.citation.volume	29
utslib.location.activity	England
utslib.for	1103 Clinical Sciences
utslib.for	1112 Oncology and Carcinogenesis
utslib.for	1701 Psychology
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health/GSH.Genetic Counselling
utslib.copyright.status	closed_access	*
dc.date.updated	2022-10-31T00:02:54Z
pubs.issue	8
pubs.publication-status	Published
pubs.volume	29
utslib.citation.issue	8

Abstract:

OBJECTIVE: Genetic testing for hereditary breast and ovarian cancer (HBOC) due to pathogenic variants in BRCA1 or BRCA2 is why most women present to familial cancer centers. Despite being assessed as low risk for HBOC, many women proceed with genetic testing. This study explored the genetic testing experiences of unaffected women at low risk of HBOC to clarify what motivates these women to have testing, and what are the implications of the results. METHODS: A qualitative approach was taken. Participants included women who had genetic testing for HBOC from 2016-2018 at the Parkville Familial Cancer Centre in Melbourne, Australia. In-depth, semi-structured interviews were conducted, and thematic analysis was undertaken on transcripts; transcripts were coded, codes were organized into a hierarchical system of categories/subcategories, and key themes were identified. RESULTS: Analysis of 19 transcripts identified five themes: family underpinned all motivators for HBOC genetic testing; health professionals were influential throughout the process; participants were planning for a positive result; results influenced screening-anxiety and frequency; and negative results gave participants relief in many different ways. The three participants with positive results reported feeling shocked at the results and empowered giving this information to family members. CONCLUSIONS: Women at low HBOC risk may be motivated to seek genetic testing, and access to this is increasingly offered through non-genetic health professionals. Professionals can support clients through genetic testing by recognizing familial experiences, providing accurate information, addressing risk perceptions, and understanding cancer anxiety felt by many women.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/163000