PDF(Pubmed)
Abstract：
The role of genetic counselors is evolving in response to health-related direct-to-consumer genetic tests (DTC-GT). While there is consensus in the literature that pre- and post-DTC-GT genetic counseling would benefit consumers, genetic counselors have reservations about DTC-GTs, and there is a paucity of research on providing DTC-GT counseling. This pilot quantitative survey is the first study to examine Canadian genetic counselors\' views on DTC-GTs and how this disruptive biotechnology affects their role, and consumer informed consent and privacy. Canadian genetic counselors are cognizant of the harm to informed consent and privacy associated with DTC-GT, but are hesitant to engage directly, wary of misusing clinical time and resources. However, counselors are open to producing educational materials on DTC-GTs and collaborating with other stakeholders and the DTC-GT industry to support consumers. In this study, practical considerations for DTC-GT counseling sessions are discussed, including the unique needs of DTC-GT patients and the challenges posed by DTC-GTs to the genetic counseling duty to inform. This research benefits genetic counselors and physicians by examining how best to utilize genetic counselors\' skills in the DTC-GT context, to minimize burdens on the healthcare system and support DTC-GT consumers.
摘要：
遗传咨询师的角色正在演变，以应对与健康相关的直接面向消费者的基因测试（DTC-GT）。尽管文献中已经达成共识，即DTC-GT之前和之后的遗传咨询将使消费者受益，遗传咨询师对DTC-GTs持保留态度，关于提供DTC-GT咨询的研究很少。这项试点定量调查是第一项研究加拿大遗传咨询师对DTC-GT的看法，以及这种破坏性生物技术如何影响他们的作用。和消费者知情同意和隐私。加拿大遗传咨询师认识到与DTC-GT相关的知情同意和隐私的危害，但不愿直接参与，警惕滥用临床时间和资源。然而,辅导员愿意制作有关DTC-GT的教育材料，并与其他利益相关者和DTC-GT行业合作，以支持消费者。在这项研究中,讨论了DTC-GT咨询会议的实际考虑因素，包括DTC-GT患者的独特需求以及DTC-GT对遗传咨询义务的挑战。这项研究通过研究如何在DTC-GT环境中最好地利用遗传咨询师的技能，使遗传咨询师和医生受益。最大限度地减少医疗系统的负担，并支持DTC-GT消费者。
