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Updated: Feb 21, 2026

Optimization of Breast Biopsy and Mastectomy Sample Collection Procedures for Biobanking, Personalized Medicine, and Research Applications
Published on: September 2, 2025
Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian
Gratien Dalpé1, Ida Ngueng Feze1, Shahad Salman1
1Department of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill UniversityMontreal, QC, Canada.
Women fear genetic discrimination by insurers, impacting their willingness to undergo genetic testing for breast cancer risk. Both patients and decision-makers desire clearer communication about insurability risks.
Area of Science:
- Genetics
- Personalized Medicine
- Medical Ethics
Background:
- Genetic stratification in personalized medicine aids breast cancer risk prediction.
- Concerns exist regarding third-party access to genetic information, particularly by insurers.
- Genetic discrimination (GD) may lead to differential treatment, higher premiums, or coverage denial.
Purpose of the Study:
- To investigate women's perspectives on genetic discrimination and insurability in Quebec.
- To explore institutional issues related to insurers' use of genetic information through decision-maker interviews.
- To assess the impact of potential genetic discrimination on genetic screening uptake.
Main Methods:
- Survey of women in Quebec without a breast cancer diagnosis.
- 14 semi-structured interviews with Quebec-based decision-makers.
- Analysis of five key issues: reluctance for genetic testing, insurer interest, disclosure duties, pre-testing impact communication, and data status.
Main Results:
- Participants expressed reluctance towards genetic screening due to insurability concerns.
- Insurers' interest in genetic data and the duty to disclose were significant issues.
- Both surveyed women and interviewed decision-makers acknowledged concerns about genetic discrimination.
- A need for improved communication tools regarding insurability risks was identified.
Conclusions:
- Genetic discrimination poses a significant concern for individuals considering genetic testing.
- Enhanced communication strategies are crucial in clinical settings to address insurability risks.
- Findings on genetic discrimination concerns may be applicable across the Canadian context.
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