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

Bartley, Nicci, Best, Megan, Jacobs, Chris, Juraskova, Ilona, Newson, Ainsley J., Savard, Jacqueline, Meiser, Bettina, Ballinger, Mandy L., Thomas, David M., Biesecker, Barbara and Butow, Phyllis 2020, Cancer patients' views and understanding of genome sequencing: A qualitative study, Journal of Medical Genetics, vol. 57, no. 10, pp. 671-676, doi: 10.1136/jmedgenet-2019-106410.

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Title Cancer patients' views and understanding of genome sequencing: A qualitative study
Author(s) Bartley, Nicci
Best, Megan
Jacobs, Chris
Juraskova, Ilona
Newson, Ainsley J.
Savard, JacquelineORCID iD for Savard, Jacqueline orcid.org/0000-0002-7965-6103
Meiser, Bettina
Ballinger, Mandy L.
Thomas, David M.
Biesecker, Barbara
Butow, Phyllis
Journal name Journal of Medical Genetics
Volume number 57
Issue number 10
Start page 671
End page 676
Total pages 6
Publisher B M J Group
Place of publication London, Eng.
Publication date 2020-10-01
ISSN 0022-2593
1468-6244
Keyword(s) Science & Technology
Life Sciences & Biomedicine
Genetics & Heredity
cancer
genome sequencing
patient attitudes
psychosocial
qualitative
INFORMED-CONSENT
CLINICAL EXOME
BREAST
GENETICS
MOTIVATIONS
RISK
RECOMMENDATIONS
INFORMATION
KNOWLEDGE
Summary 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.ConclusionUnderstanding 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.
Language eng
DOI 10.1136/jmedgenet-2019-106410
Indigenous content off
Field of Research 06 Biological Sciences
11 Medical and Health Sciences
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2020, The Authors
Persistent URL http://hdl.handle.net/10536/DRO/DU:30134687

Document type: Journal Article
Collections: Faculty of Health
School of Medicine
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