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.

breast cancer genetic discrimination population survey risk-stratified screening women’s perspectives

Journal

Journal of personalized medicine
ISSN: 2075-4426
Titre abrégé: J Pers Med
Pays: Switzerland
ID NLM: 101602269

Informations de publication

Date de publication:
27 Jul 2021
Historique:
received: 04 07 2021
revised: 17 07 2021
accepted: 26 07 2021
entrez: 27 8 2021
pubmed: 28 8 2021
medline: 28 8 2021
Statut: epublish

Résumé

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.

Identifiants

pubmed: 34442372
pii: jpm11080726
doi: 10.3390/jpm11080726
pmc: PMC8398750
pii:
doi:

Types de publication

Journal Article

Langues

eng

Subventions

Organisme : Genome Canada
ID : 13529

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Auteurs

Samuel Alarie (S)

Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.

Julie Hagan (J)

Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.

Gratien Dalpé (G)

Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.

Sina Faraji (S)

Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.

Cynthia Mbuya-Bienge (C)

CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.
Department of Social and Preventive Medicine, Faculty of Medicine, Université Laval, Quebec City, QC G1V 0A6, Canada.

Hermann Nabi (H)

CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.
Department of Social and Preventive Medicine, Faculty of Medicine, Université Laval, Quebec City, QC G1V 0A6, Canada.
Université Laval Cancer Research Center, Quebec City, QC G1R 3S3, Canada.

Nora Pashayan (N)

Department of Applied Health Research, Institute of Epidemiology and Healthcare, University College London, London WC1E 6BT, UK.

Jennifer D Brooks (JD)

Dalla Lana School of Public Health, University of Toronto, Toronto, ON M5S 1A1, Canada.

Michel Dorval (M)

CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.
Faculty of Pharmacy, Université Laval, Quebec City, QC G1V 4G2, Canada.
CISSS de Chaudière-Appalaches Research Center, Lévis, QC G6V 3Z1, Canada.

Jocelyne Chiquette (J)

CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.
CHU de Québec-Université Laval, Quebec City, QC G1S 4L8, Canada.
Département de Médecine Familiale et de Médecine D'urgence, Université Laval, Quebec City, QC G1V 4G2, Canada.

Laurence Eloy (L)

Québec Cancer Program, Ministère de la Santé et des Services Sociaux, Quebec City, QC G1S 2M1, Canada.
Department of Social and Preventive Medicine, CISSS de Lanaudière-Université Laval, Quebec City, QC G1V 0A6, Canada.

Annie Turgeon (A)

CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.

Laurence Lambert-Côté (L)

CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.

Jean-Sébastien Paquette (JS)

Département de Médecine Familiale et de Médecine D'urgence, Université Laval, Quebec City, QC G1V 4G2, Canada.

Meghan J Walker (MJ)

Dalla Lana School of Public Health, University of Toronto, Toronto, ON M5S 1A1, Canada.
Ontario Health (Cancer Care Ontario), Toronto, ON M5G 2L3, Canada.

Julie Lapointe (J)

CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.

Palmira Granados Moreno (P)

Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.

Kristina Blackmore (K)

Ontario Health (Cancer Care Ontario), Toronto, ON M5G 2L3, Canada.

Michael Wolfson (M)

School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON K1G 5Z3, Canada.

Mireille Broeders (M)

Radboud Institute for Health Sciences, Radboud University Medical Center, 525 EZ Nijmegen, The Netherlands.
Dutch Expert Centre for Screening, 6538 SW Nijmegen, The Netherlands.

Bartha M Knoppers (BM)

Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.

Anna M Chiarelli (AM)

Dalla Lana School of Public Health, University of Toronto, Toronto, ON M5S 1A1, Canada.
Department of Social and Preventive Medicine, CISSS de Lanaudière-Université Laval, Quebec City, QC G1V 0A6, Canada.

Jacques Simard (J)

CHU de Québec-Université Laval Research Center, Quebec City, QC G1V 4G2, Canada.
Department of Molecular Medicine, Faculty of Medicine, Université Laval, Quebec City, QC G1V 4G2, Canada.

Yann Joly (Y)

Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.

Classifications MeSH