Factors influencing public willingness to participate in population-based hereditary cancer genetic testing: a qualitative study of public preferences.
Diego R Sanchez-Vazquez, Jonathan Avery, Whitney Qualls, Colene Bentley, Helen McTaggart-Cowan, Julianne McLeod, Lesa Dawson, Stuart Peacock
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引用次数: 0
Abstract
Over 97% of individuals with hereditary cancer predisposition remain unidentified, limiting access to life-saving prevention and screening. In British Columbia (BC), access to publicly funded genetic testing is restricted to individuals with a family history of cancer. A novel solution, population-based testing (PBT), would remove the family history requirement, providing unrestricted access for all residents. This qualitative study explored the factors influencing public willingness to participate in a PBT program in BC. We recruited BC residents through a market research company to participate in online, one-to-one, semi-structured interviews. Interested individuals were purposively sampled to ensure maximum representation in terms of age, ethnicity, and residence. Transcribed sessions were analyzed in NVivo v14. A thematic analysis was employed within a descriptive qualitative approach to identify and interpret patterns within the transcripts. Twenty 60-min interviews were conducted on Zoom from June to December 2024. Three key factors influenced potential participation in PBT: perceived utility of genetic testing, ethical and privacy concerns, and health system support. The perceived utility of genetic testing influenced individuals to assess genetic risk to reduce uncertainty and manage their health. Ethical concerns, such as the misuse of genetic data by insurers or employers, complicate decision-making. Health system support included affordable testing, continuity of care, and emotional and educational resources. Novel PBT programs should address cultural, socioeconomic and geographical inequities, while safeguarding the privacy of the public. Key to success will be the availability of emotional, educational, and financial support for individuals using PBT.
期刊介绍：
In recent years clinical cancer genetics has become increasingly important. Several events, in particular the developments in DNA-based technology, have contributed to this evolution. Clinical cancer genetics has now matured to a medical discipline which is truly multidisciplinary in which clinical and molecular geneticists work together with clinical and medical oncologists as well as with psycho-social workers.
Due to the multidisciplinary nature of clinical cancer genetics most papers are currently being published in a wide variety of journals on epidemiology, oncology and genetics. Familial Cancer provides a forum bringing these topics together focusing on the interests and needs of the clinician.
The journal mainly concentrates on clinical cancer genetics. Most major areas in the field shall be included, such as epidemiology of familial cancer, molecular analysis and diagnosis, clinical expression, treatment and prevention, counselling and the health economics of familial cancer.
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