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Indices numériques de la qualité des délibérations Les indices de la qualité des délibérations semblent montrer peu de différence entre les forums Discourse et ODG pour la présence d'arguments raisonnés, le respect du sujet discuté et l'inclusion de sources d'information complémentaires.
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La recherche empirique sur la problématique de la discrimination génétique (DG) au Québec est généralement limitée. À ce titre, cette étude vise, au moyen d’une méthodologie qualitative, à explorer et à recueillir les opinions, les expériences et les connaissances des Québécois à l’égard de la DG. En concordance avec les objectifs exploratoires de...
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Citations
... Knowledge of the legal framework governing the use of personal genetic data by employers and insurers is a subject that is quite hard to master for laypeople [28]. Thus, it is not surprising that knowledge and awareness of such regulation are relatively low in Canada, as this was also noted by several empirical studies conducted primarily in the United States [7,[19][20][21]. ...
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.
Recent advancements in genetic technologies have made genetic information increasingly sought out in a wide range of non‐therapeutic contexts, which has increased the risk that such information be used to discriminate against individuals. Frequently, it is genetic counselors who have to respond to questions about genetic discrimination (GD) from worried patients. Here, we examine the general Canadian public's knowledge, attitudes, and concerns about GD through a comprehensive analysis and categorization of posts from selected Canadian online discussion forums. Overall, we collected 1,638 posts, from which we coded 694 posts originating from newspaper comment sections and Reddit posts that were categorized to yield 6 main themes that consistently concerned Canadian users on the topics of GD: (a) discussions centered around how insurance business practices can be affected by genetic information; (b) issues in employment; (c) ‘fear’ of genetic testing and eugenics; (d) preventive approaches such as law and human rights instruments; (e) the predictive value and privacy that should be conferred to genetic information; and (f) other ethical issues. Overall, discussions addressed risk stratification models applied to genetic information and personal insurance underwriting. We find that many forum users (aka forumites) fear GD in insurance and employment, consider genetic information private, and strongly support different legal approaches to prevent GD. However, we find dissension among forumites that may represent different advocacy groups such as insurers and employers. From these important concerns and social conceptions, we discuss issues that should be taken into consideration for the development of future policies and information campaigns addressing GD in Canada and other countries.
