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The PiGeOn project: protocol of a longitudinal study examining psychosocial and ethical issues and outcomes in germline genomic sequencing for cancer

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 of a longitudinal study examining psychosocial and ethical issues and outcomes in germline genomic sequencing for cancer, BMC Cancer, vol. 18, no. 1, pp. 1-10, doi: 10.1186/s12885-018-4366-x.

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Title The PiGeOn project: protocol of a longitudinal study examining psychosocial and ethical issues and outcomes in germline genomic sequencing for cancer
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 454
Start page 1
End page 10
Total pages 10
Publisher BMC
Place of publication London, Eng.
Publication date 2018-04-23
ISSN 1471-2407
Keyword(s) Genomics
Neoplasm
Psychosocial factors
Ethical issues
Genetic testing
Cancer
Germline genomic sequencing
Summary Background: Advances in genomics offer promise for earlier detection or prevention of cancer, by personalisation of medical care tailored to an individual’s genomic risk status. However genome sequencing can generate an unprecedented volume of results for the patient to process with potential implications for their families and reproductive choices. This paper describes a protocol for a study (PiGeOn) that aims to explore how patients and their blood relatives experience germline genomic sequencing, to help guide the appropriate future implementation of genome sequencing into routine clinical practice. Methods: We have designed a mixed-methods, prospective, cohort sub-study of a germline genomic sequencing study that targets adults with cancer suggestive of a genetic aetiology. One thousand probands and 2000 of their blood relatives will undergo germline genomic sequencing as part of the parent study in Sydney, Australia between 2016 and 2020. Test results are expected within12–15 months of recruitment. For the PiGeOn sub-study, participants will be invited to complete surveys at baseline, three months and twelve months after baseline using self-administered questionnaires, to assess the experience of long waits for results (despite being informed that results may not be returned) and expectations of receiving them. Subsets of both probands and blood relatives will be purposively sampled and invited to participate in three semi-structured qualitative interviews (at baseline and each follow-up) to triangulate the data. Ethical themes identified in the data will be used to inform critical revisions of normative ethical concepts or frameworks. Discussion: This will be one of the first studies internationally to follow the psychosocial impact on probands and their blood relatives who undergo germline genome sequencing, over time. Study results will inform ongoing ethical debates on issues such as informed consent for genomic sequencing, and informing participants and their relatives of specific results. The study will also provide important outcome data concerning the psychological impact of prolonged waiting for germline genomic sequencing. These data are needed to ensure that when germline genomic sequencing is introduced into standard clinical settings, ethical concepts are embedded, and patients and their relatives are adequately prepared and supported during and after the testing process.
Language eng
DOI 10.1186/s12885-018-4366-x
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:30131004

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.