Abstract：
Advances in medical genetics have led to a significant increase in demand for genetic services and expertise across almost all medical specialties. Genetic counselors (GCs) in Canada play key roles in genetic services both within and outside of the Genetics Clinic, while not being regulated or legally recognized as healthcare professionals (HCPs) in most provinces. Understanding whether GCs outside of the \"traditional\" Genetics Clinic influence patient care, their level of professional autonomy and supervisory structure is, therefore, important. In this study, we explore the current landscape of GC practice outside of the Genetics Clinic by describing positions, determining the professional scope of practice, as defined by the Canadian Association of Genetic Counselors (CAGC) and Canadian Board of Genetic Counseling (CBGC) core competencies, and by elucidating associated ethico-legal implications. An online survey was developed and distributed to GCs working with patient-related data in Canada in positions outside of the Genetics Clinic through the CAGC ListServ and accessed between March 5 and April 9, 2021. Thirty GCs were included in the study, with 16/30 in public healthcare system positions. Most respondents held roles with direct (11/30) and indirect (14/30) impact on patient care and management, and the majority reported performing their primary roles with minimal supervision (56%) or complete independence (36%). Most roles (22/25) elicited by respondents were considered to be within the GC scope of practice, except for administrative tasks and special projects. GCs were the only genetics-trained professional(s) in 8/30 of respondents\' workplaces. The results of the current study support the value of GCs translatable skillset in positions beyond the Genetics Clinic, and outline ethico-legal implications for GCs, regulated HCPs, patients, and health institutions in the absence of legal recognition, including medical-legal liability and title protection. This study provides evidence in support of regulation of GCs as HCPs.
摘要：
医学遗传学的进步导致几乎所有医学专业对遗传服务和专业知识的需求显着增加。加拿大的遗传咨询师（GC）在遗传学诊所内外的遗传服务中起着关键作用。而在大多数省份没有被监管或法律认可为医疗保健专业人员(HCP)。了解“传统”遗传学诊所之外的GC是否会影响患者护理，他们的专业自主权和监管结构水平是，因此,重要。在这项研究中,我们通过描述位置来探索遗传学诊所之外的GC实践的当前景观，确定专业实践范围，根据加拿大遗传顾问协会（CAGC）和加拿大遗传咨询委员会（CBGC）核心能力的定义，并阐明相关的伦理法律含义。通过CAGCListServ开发了一项在线调查，并分发给加拿大在遗传学诊所以外的职位上处理患者相关数据的GC，并于2021年3月5日至4月9日进行了访问。研究中包括30个GC，16/30的公共医疗系统职位。大多数受访者对患者护理和管理有直接(11/30)和间接(14/30)影响，大多数人报告在最低限度的监督(56%)或完全独立(36%)的情况下履行他们的主要角色。受访者提出的大多数角色(22/25)被认为是在GC实践范围内，除了行政任务和特殊项目。GCs是8/30受访者工作场所中唯一接受过遗传学培训的专业人员。当前研究的结果支持GCs翻译技能在遗传学诊所以外的职位上的价值，并概述了对GCs的伦理法律影响，受管制的HCP，病人,和卫生机构在没有法律承认的情况下，包括医疗法律责任和所有权保护。这项研究提供了支持将GCs调节为HCP的证据。
