Dalpé Gratien, Ngueng Feze Ida, Salman Shahad, Joly Yann, Hagan Julie, Lévesque Emmanuelle, Dorval Véronique, Blouin-Bougie Jolyane, Amara Nabil, Dorval Michel, Simard Jacques
Department of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill UniversityMontreal, QC, Canada.
Centre de Recherche du CHU de Quebec, Laval UniversityQuebec, QC, Canada.
Front Genet. 2017 Sep 21;8:128. doi: 10.3389/fgene.2017.00128. eCollection 2017.
Genetic stratification approaches in personalized medicine may considerably improve our ability to predict breast cancer risk for women at higher risk of developing breast cancer. Notwithstanding these advantages, concerns have been raised about the use of the genetic information derived in these processes, outside of the research and medical health care settings, by third parties such as insurers. Indeed, insurance applicants are asked to consent to insurers accessing their medical information (implicitly including genetic) to verify or determine their insurability level, or eligibility to certain insurance products. This use of genetic information may result in the differential treatment of individuals based on their genetic information, which could lead to higher premium, exclusionary clauses or even the denial of coverage. This phenomenon has been commonly referred to as "Genetic Discrimination" (GD). In the Canadian context, where federal Bill S-201, , has recently been enacted but may be subject to constitutional challenges, information about potential risks to insurability may raise issues in the clinical context. We conducted a survey with women in Quebec who have never been diagnosed with breast cancer to document their perspectives. We complemented the research with data from 14 semi-structured interviews with decision-makers in Quebec to discuss institutional issues raised by the use of genetic information by insurers. Our results provide findings on five main issues: (1) the reluctance to undergo genetic screening test due to insurability concerns, (2) insurers' interest in genetic information, (3) the duty to disclose genetic information to insurers, (4) the disclosure of potential impacts on insurability before genetic testing, and (5) the status of genetic information compared to other health data. Overall, both groups of participants (the women surveyed and the decision-makers interviewed) acknowledged having concerns about GD and reported a need for better communication tools discussing insurability risk. Our conclusions regarding concerns about GD and the need for better communication tools in the clinical setting may be transferable to the broader Canadian context.
个性化医疗中的基因分层方法可能会显著提高我们预测乳腺癌高危女性患乳腺癌风险的能力。尽管有这些优势，但人们对这些过程中产生的基因信息在研究和医疗保健环境之外被保险公司等第三方使用表示担忧。事实上，保险申请人被要求同意保险公司获取他们的医疗信息（含蓄地包括基因信息），以核实或确定他们的可保险性水平或对某些保险产品的资格。这种基因信息的使用可能导致基于个人基因信息的差别对待，这可能导致更高的保费、免责条款甚至保险范围的拒绝。这种现象通常被称为“基因歧视”（GD）。在加拿大，联邦第S - 201号法案最近已颁布，但可能面临宪法挑战，可保险性潜在风险的信息在临床环境中可能会引发问题。我们对魁北克从未被诊断出患有乳腺癌的女性进行了一项调查，以记录她们的观点。我们用来自对魁北克决策者的14次半结构化访谈的数据对该研究进行补充，以讨论保险公司使用基因信息引发的机构问题。我们的结果提供了关于五个主要问题的发现：（1）由于对可保险性的担忧而不愿接受基因筛查测试；（2）保险公司对基因信息的兴趣；（3）向保险公司披露基因信息的义务；（4）在基因检测前披露对可保险性的潜在影响；（5）基因信息与其他健康数据相比的地位。总体而言，两组参与者（接受调查的女性和接受访谈的决策者）都承认对基因歧视有所担忧，并报告需要更好的沟通工具来讨论可保险性风险。我们关于对基因歧视的担忧以及在临床环境中需要更好的沟通工具的结论可能适用于更广泛的加拿大背景。
