Risk-Stratified Approach to Breast Cancer Screening in Canada: Women's Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data

Samuel Alarie¹, Julie Hagan¹, Gratien Dalpé¹, Sina Faraji¹, Cynthia Mbuya-Bienge^{2

3}, Hermann Nabi^{2

3

4}, Nora Pashayan⁵, Jennifer D Brooks⁶, Michel Dorval^{2

7

8}, Jocelyne Chiquette^{2

9

10}, Laurence Eloy^{11

12}, Annie Turgeon², Laurence Lambert-Côté², Jean-Sébastien Paquette¹⁰, Meghan J Walker^{6

13}, Julie Lapointe², Palmira Granados Moreno¹, Kristina Blackmore¹³, Michael Wolfson¹⁴, Mireille Broeders^{15

16}, The Perspective I I Study Group, Bartha M Knoppers¹, Anna M Chiarelli^{6

12}, Jacques Simard^{2

17}, Yann Joly¹

Affiliations

¹ Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.
² CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.
³ Department of Social and Preventive Medicine, Faculty of Medicine, Université Laval, Quebec City, QC G1V 0A6, Canada.
⁴ Université Laval Cancer Research Center, Quebec City, QC G1R 3S3, Canada.
⁵ Department of Applied Health Research, Institute of Epidemiology and Healthcare, University College London, London WC1E 6BT, UK.
⁶ Dalla Lana School of Public Health, University of Toronto, Toronto, ON M5S 1A1, Canada.
⁷ Faculty of Pharmacy, Université Laval, Quebec City, QC G1V 4G2, Canada.
⁸ CISSS de Chaudière-Appalaches Research Center, Lévis, QC G6V 3Z1, Canada.
⁹ CHU de Québec-Université Laval, Quebec City, QC G1S 4L8, Canada.
¹⁰ Département de Médecine Familiale et de Médecine D'urgence, Université Laval, Quebec City, QC G1V 4G2, Canada.
¹¹ Québec Cancer Program, Ministère de la Santé et des Services Sociaux, Quebec City, QC G1S 2M1, Canada.
¹² Department of Social and Preventive Medicine, CISSS de Lanaudière-Université Laval, Quebec City, QC G1V 0A6, Canada.
¹³ Ontario Health (Cancer Care Ontario), Toronto, ON M5G 2L3, Canada.
¹⁴ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON K1G 5Z3, Canada.
¹⁵ Radboud Institute for Health Sciences, Radboud University Medical Center, 525 EZ Nijmegen, The Netherlands.
¹⁶ Dutch Expert Centre for Screening, 6538 SW Nijmegen, The Netherlands.
¹⁷ Department of Molecular Medicine, Faculty of Medicine, Université Laval, Quebec City, QC G1V 4G2, Canada.

PMID: 34442372
PMCID: PMC8398750
DOI: 10.3390/jpm11080726

Risk-Stratified Approach to Breast Cancer Screening in Canada: Women's Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data

Samuel Alarie et al. J Pers Med. 2021.

. 2021 Jul 27;11(8):726.

doi: 10.3390/jpm11080726.

Authors

Affiliations

¹ Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.
² CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.
³ Department of Social and Preventive Medicine, Faculty of Medicine, Université Laval, Quebec City, QC G1V 0A6, Canada.
⁴ Université Laval Cancer Research Center, Quebec City, QC G1R 3S3, Canada.
⁵ Department of Applied Health Research, Institute of Epidemiology and Healthcare, University College London, London WC1E 6BT, UK.
⁶ Dalla Lana School of Public Health, University of Toronto, Toronto, ON M5S 1A1, Canada.
⁷ Faculty of Pharmacy, Université Laval, Quebec City, QC G1V 4G2, Canada.
⁸ CISSS de Chaudière-Appalaches Research Center, Lévis, QC G6V 3Z1, Canada.
⁹ CHU de Québec-Université Laval, Quebec City, QC G1S 4L8, Canada.
¹⁰ Département de Médecine Familiale et de Médecine D'urgence, Université Laval, Quebec City, QC G1V 4G2, Canada.
¹¹ Québec Cancer Program, Ministère de la Santé et des Services Sociaux, Quebec City, QC G1S 2M1, Canada.
¹² Department of Social and Preventive Medicine, CISSS de Lanaudière-Université Laval, Quebec City, QC G1V 0A6, Canada.
¹³ Ontario Health (Cancer Care Ontario), Toronto, ON M5G 2L3, Canada.
¹⁴ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON K1G 5Z3, Canada.
¹⁵ Radboud Institute for Health Sciences, Radboud University Medical Center, 525 EZ Nijmegen, The Netherlands.
¹⁶ Dutch Expert Centre for Screening, 6538 SW Nijmegen, The Netherlands.
¹⁷ Department of Molecular Medicine, Faculty of Medicine, Université Laval, Quebec City, QC G1V 4G2, Canada.

PMID: 34442372
PMCID: PMC8398750
DOI: 10.3390/jpm11080726

Abstract

The success of risk-stratified approaches in improving population-based breast cancer screening programs depends in no small part on women's buy-in. Fear of genetic discrimination (GD) could be a potential barrier to genetic testing uptake as part of risk assessment. Thus, the objective of this study was twofold. First, to evaluate Canadian women's knowledge of the legislative context governing GD. Second, to assess their concerns about the possible use of breast cancer risk levels by insurance companies or employers. We use a cross-sectional survey of 4293 (age: 30-69) women, conducted in four Canadian provinces (Alberta, British Colombia, Ontario and Québec). Canadian women's knowledge of the regulatory framework for GD is relatively limited, with some gaps and misconceptions noted. About a third (34.7%) of the participants had a lot of concerns about the use of their health information by employers or insurers; another third had some concerns (31.9%), while 20% had no concerns. There is a need to further educate and inform the Canadian public about GD and the legal protections that exist to prevent it. Enhanced knowledge could facilitate the implementation and uptake of risk prediction informed by genetic factors, such as the risk-stratified approach to breast cancer screening that includes risk levels.

Keywords: breast cancer; genetic discrimination; population survey; risk-stratified screening; women’s perspectives.

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Conflict of interest statement

The authors declare no conflict of interest.

References

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Risk-Stratified Approach to Breast Cancer Screening in Canada: Women's Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data

Affiliations

Risk-Stratified Approach to Breast Cancer Screening in Canada: Women's Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data

Authors

Affiliations

Abstract

Conflict of interest statement

References

Grants and funding

LinkOut - more resources

Full Text Sources