Stakeholder attitudes towards establishing a national genomics registry of inherited cancer predisposition: a qualitative study.

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

SUBMITTER: Meiser B 

PROVIDER: S-EPMC8799807 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature