Please use this identifier to cite or link to this item: https://ahro.austin.org.au/austinjspui/handle/1/27946
Title: Stakeholder attitudes towards establishing a national genomics registry of inherited cancer predisposition: a qualitative study.
Austin Authors: Meiser, Bettina;Monnik, Melissa;Austin, Rachel;Nichols, Cassandra;Cops, Elisa;Salmon, Lucinda ;Spurdle, Amanda B;Macrae, Finlay;Taylor, Natalie;Pachter, Nicholas;James, Paul;Kaur, Rajneesh
Affiliation: School of Medicine and Pharmacology, University of Western Australia, Perth, Australia
Daffodil Centre, The University of Sydney, a joint venture with Cancer Council NSW, Sydney, Australia
Lowy Cancer Research Centre C25, University of New South Wales, UNSW Sydney, Sydney, NSW, 2052, Australia
Department of Medicine, Department of Colorectal Medicine and Genetics, Royal Melbourne Hospital, University of Melbourne, Melbourne, Australia
Psychosocial Research Group, Prince of Wales Clinical School, Faculty of Medicine, UNSW Sydney, Sydney, Australia
Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre and Royal Melbourne Hospital, Melbourne, Australia
Genetic Services of Western Australia, Perth, Western Australia, Australia
Genetic Health Queensland, Royal Brisbane and Women's Hospital, Herston, Queensland, Australia
Adult Genetics Unit, Royal Adelaide Hospital, Adelaide, Australia
Clinical Genetics
Molecular Cancer Epidemiology Laboratory, QIMR Berghofer Medical Research Institute, Herston, Queensland, Australia
Issue Date: 2-Nov-2021
Date: 2021-11-02
Publication information: Journal of Community Genetics 2021; online first: 2 November
Abstract: This study aimed to describe the acceptability and perceived barriers and enablers to establish a national registry targeting carriers of pathogenic variants in cancer susceptibility genes from stakeholders' perspectives. Such a registry may effectively target carriers to translate existing research findings into optimised clinical care and provide a population-level resource for further clinical research and new gene and therapy discovery. In-depth interviews were conducted with individuals from four stakeholder groups: carriers of pathogenic variants, healthcare professionals, data custodians from the field of familial cancer, and heads of molecular pathology laboratories. Interview data were subjected to a qualitative analysis guided by a thematic analysis framework using NVivo software. A total of 28 individuals were interviewed: 11 carriers, 8 healthcare professionals, 5 laboratory heads, and 4 data custodians. All carriers and healthcare professionals were enthusiastic about the potential research applications of the registry. Carriers described that altruistic motivations provided the foundation of their support of the planned registry. Some carriers felt comfortable with a broad consent (consenting once, prospectively), while others preferred a narrow consent approach (consenting each time data is accessed). Some carriers and data custodians and registry developers also expressed a reluctance to link family member data without appropriate consent. Participants' enthusiasm and support for a national registry herald a productive and responsive research partnership once the registry has been established. Participants' views can be used to inform the approaches to be taken to develop and manage such a registry as an implicit codesign approach.
URI: https://ahro.austin.org.au/austinjspui/handle/1/27946
DOI: 10.1007/s12687-021-00559-8
ORCID: 0000-0002-5086-0784
Journal: Journal of Community Genetics
PubMed URL: 34727336
ISSN: 1868-310X
Type: Journal Article
Subjects: Attitudes
Carriers
Database
Genomics
Inherited cancer
Registry
Stakeholder
Appears in Collections:Journal articles

Show full item record

Page view(s)

22
checked on Nov 3, 2024

Google ScholarTM

Check


Items in AHRO are protected by copyright, with all rights reserved, unless otherwise indicated.