From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

Best, MC; Butow, P; Savard, J; Newson, AJ; Campbell, R; Vatter, S; Napier, CE; Bartley, N; Tucker, K; Ballinger, ML; Thomas, DM; PiGeOn Project,

From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

Best, MC Butow, P Savard, J Newson, AJ Campbell, R Vatter, S Napier, CE Bartley, N

Tucker, K Ballinger, ML Thomas, DM PiGeOn Project,

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Publisher:: OXFORD UNIV PRESS
Publication Type:: Journal Article
Citation:: Oncologist, 2024, 29, (9), pp. e1169-e1179
Issue Date:: 2024-09-06

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Field	Value	Language
dc.contributor.author	Best, MC
dc.contributor.author	Butow, P
dc.contributor.author	Savard, J
dc.contributor.author	Newson, AJ
dc.contributor.author	Campbell, R
dc.contributor.author	Vatter, S
dc.contributor.author	Napier, CE
dc.contributor.author	Bartley, N https://orcid.org/0000-0001-9052-1616
dc.contributor.author	Tucker, K
dc.contributor.author	Ballinger, ML
dc.contributor.author	Thomas, DM
dc.contributor.author	PiGeOn Project,
dc.date.accessioned	2024-10-09T01:03:02Z
dc.date.available	2024-02-28
dc.date.available	2024-10-09T01:03:02Z
dc.date.issued	2024-09-06
dc.identifier.citation	Oncologist, 2024, 29, (9), pp. e1169-e1179
dc.identifier.issn	1083-7159
dc.identifier.issn	1549-490X
dc.identifier.uri	http://hdl.handle.net/10453/181279
dc.description.abstract	Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.
dc.format	Print
dc.language	eng
dc.publisher	OXFORD UNIV PRESS
dc.relation.ispartof	Oncologist
dc.relation.isbasedon	10.1093/oncolo/oyae074
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1112 Oncology and Carcinogenesis
dc.subject.classification	Oncology & Carcinogenesis
dc.subject.classification	3211 Oncology and carcinogenesis
dc.subject.mesh	Humans
dc.subject.mesh	Female
dc.subject.mesh	Cross-Sectional Studies
dc.subject.mesh	Male
dc.subject.mesh	Neoplasms
dc.subject.mesh	Biopsy
dc.subject.mesh	Middle Aged
dc.subject.mesh	Surveys and Questionnaires
dc.subject.mesh	Adult
dc.subject.mesh	Genomics
dc.subject.mesh	Aged
dc.subject.mesh	Ownership
dc.subject.mesh	Genetic Testing
dc.subject.mesh	Humans
dc.subject.mesh	Neoplasms
dc.subject.mesh	Biopsy
dc.subject.mesh	Cross-Sectional Studies
dc.subject.mesh	Genomics
dc.subject.mesh	Ownership
dc.subject.mesh	Adult
dc.subject.mesh	Aged
dc.subject.mesh	Middle Aged
dc.subject.mesh	Female
dc.subject.mesh	Male
dc.subject.mesh	Genetic Testing
dc.subject.mesh	Surveys and Questionnaires
dc.title	From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.
dc.type	Journal Article
utslib.citation.volume	29
utslib.location.activity	England
utslib.for	1112 Oncology and Carcinogenesis
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
utslib.copyright.status	open_access	*
dc.rights.license	This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0). To view a copy of this license, visit https://creativecommons.org/licenses/by/4.0/
dc.date.updated	2024-10-09T01:03:00Z
pubs.issue	9
pubs.publication-status	Published
pubs.volume	29
utslib.citation.issue	9

Abstract:

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.

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http://hdl.handle.net/10453/181279