Cancer patients' views and understanding of genome sequencing: a qualitative study.

Bartley, N; Best, M; Jacobs, C; Juraskova, I; Newson, AJ; Savard, J; Meiser, B; Ballinger, ML; Thomas, DM; Biesecker, B; Butow, P

Cancer patients' views and understanding of genome sequencing: a qualitative study.

Bartley, N Best, M Jacobs, C

Juraskova, I Newson, AJ Savard, J Meiser, B Ballinger, ML Thomas, DM Biesecker, B Butow, P

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Publisher:: BMJ PUBLISHING GROUP
Publication Type:: Journal Article
Citation:: Journal of medical genetics, 2020, 57, (10), pp. 671-676
Issue Date:: 2020-10

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Field	Value	Language
dc.contributor.author	Bartley, N
dc.contributor.author	Best, M
dc.contributor.author	Jacobs, C https://orcid.org/0000-0002-9557-9080
dc.contributor.author	Juraskova, I
dc.contributor.author	Newson, AJ
dc.contributor.author	Savard, J
dc.contributor.author	Meiser, B
dc.contributor.author	Ballinger, ML
dc.contributor.author	Thomas, DM
dc.contributor.author	Biesecker, B
dc.contributor.author	Butow, P
dc.date.accessioned	2021-04-01T03:56:56Z
dc.date.available	2019-12-22
dc.date.available	2021-04-01T03:56:56Z
dc.date.issued	2020-10
dc.identifier.citation	Journal of medical genetics, 2020, 57, (10), pp. 671-676
dc.identifier.issn	0022-2593
dc.identifier.issn	1468-6244
dc.identifier.uri	http://hdl.handle.net/10453/147783
dc.description.abstract	<h4>Background</h4>Little is known about knowledge of, and attitudes towards, genome sequencing (GS) among individuals with a personal history of cancer who decide to undergo GS. This qualitative study aimed to investigate baseline knowledge and attitudes among individuals previously diagnosed with a cancer of likely genetic origin who have consented to GS.<h4>Methods</h4>Semistructured interviews were conducted with purposively selected participants (n=20) from the longitudinal Psychosocial Issues in Genomic Oncology study, within a month of consenting to GS and prior to receiving any results. Participants were adults with a cancer of likely genetic aetiology who are undertaking GS as part of a larger genetic study.<h4>Results</h4>Analysis identified three main themes: limited understanding of genomics; multifactorial motivation; and complex decision making. While motivations such as obtaining health information about self and family appear to be the main drivers for undertaking GS, these motivations are sometimes based on limited knowledge of the accuracy and utility of GS, creating unrealistic expectations. This in turn can prolong the deliberation process and lead to ongoing decisional conflict.<h4>Conclusion</h4>Understanding the degree and nature of patient understanding of GS, as well as their attitudes and decision-making processes, will enable healthcare professionals to better manage patient expectations and appropriately engage and support patients to make an informed decision when pursuing GS.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	BMJ PUBLISHING GROUP
dc.relation.ispartof	Journal of medical genetics
dc.relation.isbasedon	10.1136/jmedgenet-2019-106410
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	06 Biological Sciences, 11 Medical and Health Sciences
dc.subject.classification	Genetics & Heredity
dc.title	Cancer patients' views and understanding of genome sequencing: a qualitative study.
dc.type	Journal Article
utslib.citation.volume	57
utslib.location.activity	England
utslib.for	06 Biological Sciences
utslib.for	11 Medical and Health Sciences
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	*
pubs.consider-herdc	false
dc.date.updated	2021-04-01T03:56:55Z
pubs.issue	10
pubs.publication-status	Published
pubs.volume	57
utslib.citation.issue	10

Abstract:

Background

Little is known about knowledge of, and attitudes towards, genome sequencing (GS) among individuals with a personal history of cancer who decide to undergo GS. This qualitative study aimed to investigate baseline knowledge and attitudes among individuals previously diagnosed with a cancer of likely genetic origin who have consented to GS.

Methods

Semistructured interviews were conducted with purposively selected participants (n=20) from the longitudinal Psychosocial Issues in Genomic Oncology study, within a month of consenting to GS and prior to receiving any results. Participants were adults with a cancer of likely genetic aetiology who are undertaking GS as part of a larger genetic study.

Results

Analysis identified three main themes: limited understanding of genomics; multifactorial motivation; and complex decision making. While motivations such as obtaining health information about self and family appear to be the main drivers for undertaking GS, these motivations are sometimes based on limited knowledge of the accuracy and utility of GS, creating unrealistic expectations. This in turn can prolong the deliberation process and lead to ongoing decisional conflict.

Conclusion

Understanding the degree and nature of patient understanding of GS, as well as their attitudes and decision-making processes, will enable healthcare professionals to better manage patient expectations and appropriately engage and support patients to make an informed decision when pursuing GS.

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

http://hdl.handle.net/10453/147783