Dalpé Gratien, Pinkesz Miriam, Oliviero Elisabeth, Tolymbek Maria, Joly Yann
Department of Human Genetics, Faculty of Medicine and Health Sciences, McGill University, Montréal, QC, Canada.
J Genet Couns. 2021 Dec;30(6):1613-1628. doi: 10.1002/jgc4.1427. Epub 2021 Apr 19.
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.
基因技术的最新进展使得在广泛的非治疗背景下，人们越来越多地寻求基因信息，这增加了此类信息被用于歧视个人的风险。通常，遗传咨询师不得不回应忧心忡忡的患者关于基因歧视（GD）的问题。在此，我们通过对加拿大选定在线讨论论坛的帖子进行全面分析和分类，来审视加拿大公众对基因歧视的了解、态度和担忧。总体而言，我们收集了1638篇帖子，从中筛选出694篇源自报纸评论区和Reddit帖子的内容，并将其分类，得出6个主要主题，这些主题一直是加拿大用户在基因歧视话题上所关注的：（a）围绕保险业务操作如何受到基因信息影响展开的讨论；（b）就业方面的问题；（c）对基因检测和优生学的“恐惧”；（d）法律和人权工具等预防措施；（e）应赋予基因信息的预测价值和隐私性；（f）其他伦理问题。总体而言，讨论涉及应用于基因信息和个人保险承保的风险分层模型。我们发现，许多论坛用户（即“坛友”）担心保险和就业方面的基因歧视，认为基因信息是私密的，并强烈支持采用不同法律手段来预防基因歧视。然而，我们发现坛友之间存在分歧，这些分歧可能代表了不同的利益群体，如保险公司和雇主。基于这些重要关切和社会观念，我们讨论了在加拿大及其他国家制定未来应对基因歧视的政策和宣传活动时应考虑的问题。
