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The PiGeOn project: protocol for a longitudinal study examining psychosocial, behavioural and ethical issues and outcomes in cancer tumour genomic profiling

Best, M, Newson, AJ, Meiser, B, Juraskova, I, Goldstein, D, Tucker, K, Ballinger, ML, Hess, D, Schlub, TE, Biesecker, B, Vines, R, Vines, K, Thomas, D, Young, M-A, Savard, Jacqueline, Jacobs, C and Butow, P 2018, The PiGeOn project: protocol for a longitudinal study examining psychosocial, behavioural and ethical issues and outcomes in cancer tumour genomic profiling, BMC Cancer, vol. 18, no. 1, pp. 1-10, doi: 10.1186/s12885-018-4310-0.

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Title The PiGeOn project: protocol for a longitudinal study examining psychosocial, behavioural and ethical issues and outcomes in cancer tumour genomic profiling
Author(s) Best, M
Newson, AJ
Meiser, B
Juraskova, I
Goldstein, D
Tucker, K
Ballinger, ML
Hess, D
Schlub, TE
Biesecker, B
Vines, R
Vines, K
Thomas, D
Young, M-A
Savard, JacquelineORCID iD for Savard, Jacqueline orcid.org/0000-0002-7965-6103
Jacobs, C
Butow, P
Journal name BMC Cancer
Volume number 18
Issue number 1
Article ID 389
Start page 1
End page 10
Total pages 10
Publisher BMC
Place of publication London, Eng.
Publication date 2018-04-05
ISSN 1471-2407
Keyword(s) Tumour genomic profiling
Genome sequencing
Germline sequencing
Molecular profiling
Cancer
Psychosocial factors
Health behaviors
Ethical issues
Summary Background: Genomic sequencing in cancer (both tumour and germline), and development of therapies targeted to tumour genetic status, hold great promise for improvement of patient outcomes. However, the imminent introduction of genomics into clinical practice calls for better understanding of how patients value, experience, and cope with this novel technology and its often complex results. Here we describe a protocol for a novel mixed-methods, prospective study (PiGeOn) that aims to examine patients’ psychosocial, cognitive, affective and behavioural responses to tumour genomic profiling and to integrate a parallel critical ethical analysis of returning results. Methods: This is a cohort sub-study of a parent tumour genomic profiling programme enrolling patients with advanced cancer. One thousand patients will be recruited for the parent study in Sydney, Australia from 2016 to 2019. They will be asked to complete surveys at baseline, three, and five months. Primary outcomes are: knowledge, preferences, attitudes and values. A purposively sampled subset of patients will be asked to participate in three semi-structured interviews (at each time point) to provide deeper data interpretation. Relevant ethical themes will be critically analysed to iteratively develop or refine normative ethical concepts or frameworks currently used in the return of genetic information. Discussion: This will be the first Australian study to collect longitudinal data on cancer patients’ experience of tumour genomic profiling. Findings will be used to inform ongoing ethical debates on issues such as how to effectively obtain informed consent for genomic profiling return results, distinguish between research and clinical practice and manage patient expectations. The combination of quantitative and qualitative methods will provide comprehensive and critical data on how patients cope with ‘actionable’ and ‘non-actionable’ results. This information is needed to ensure that when tumour genomic profiling becomes part of routine clinical care, ethical considerations are embedded, and patients are adequately prepared and supported during and after receiving results.
Language eng
DOI 10.1186/s12885-018-4310-0
Indigenous content off
Field of Research 1112 Oncology and Carcinogenesis
1117 Public Health and Health Services
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2018, The Authors
Free to Read? Yes
Use Rights Creative Commons Attribution licence
Persistent URL http://hdl.handle.net/10536/DRO/DU:30131005

Document type: Journal Article
Collections: Faculty of Health
School of Medicine
Open Access Collection
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.