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

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.

Feasibility and Acceptability of Personalized Breast Cancer Screening (DECIDO Study): A Single-Arm Proof-of-Concept Trial

“…In contrast, in a European study, 94% of high-risk women positively rated increasing the frequency of screening [ 24 ]. When assessing the feasibility of implementing a personalized screening program, Alarie et al [ 25 ] drew attention to concerns about the potential misuse of personal and genetic information by employers and insurers and highlighted women’s low awareness of the legislative framework for genetic discrimination. Women’s concerns about the potential costs associated with risk-based screening were raised by Rainey et al [ 24 ], who proposed changes to the screening policy to ensure equal access, and by McWilliams et al [ 23 ] and Rainey et al [ 26 ], who identified women’s concerns about the need to improve the accuracy of breast cancer risk prediction and to provide personalized risk information.…”

Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing

“…Respondents’ awareness regarding the use of genetic test results by life insurers was limited, with less than 20% being aware that the practice is legal, or that the FSC moratorium exists. This lack of awareness regarding the legal status of genetic discrimination is reflected internationally [ 38 , 39 ], and was accompanied by an overwhelming view that using genetic test results in life insurance should not be allowed. Further, when information about the terms of the moratorium were provided (see Supplementary file S 1 , p14), it became clear that consumers did not consider it to be an adequate mechanism for regulating this issue, with a large majority rating the moratorium’s temporary nature, industry self-regulation, and low financial limits as negative aspects.…”

Personalized Approaches for the Prevention and Treatment of Breast Cancer

“…Using the same dataset, Alarie et al [ 26 ] sought to examine women’s knowledge of the legislative context governing genetic discrimination (GD) and assess their concerns about the possible use of BC-risk-level information by insurers and employers. They found that Canadian women had limited knowledge of the regulatory framework related to GD.…”