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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 |
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