<p>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.</p>

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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

摘要

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.