Chad Lauren, Dawson Angelika J, Goh Elaine Suk-Ying
Education, Ethics and Public Policy Committee, Canadian College of Medical Geneticists, Kingston, Ontario, Canada.
Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, Ontario, Canada.
J Med Genet. 2022 Jan;59(1):101-104. doi: 10.1136/jmedgenet-2020-107394. Epub 2020 Nov 16.
The COVID-19 pandemic has disrupted the provision of genetic care in Canada. With the public health effort to flatten the curve, many clinics have moved to virtual care for select populations of patients while triaging and postponing others. As genetic services are asked to gradually resume, a roadmap is needed to ensure clinical care decisions for at-risk patients are transparent and equitable, that postponed care is resumed and that patients with or waiting for a genetic diagnosis are not disproportionately affected or abandoned.The purpose of this document is to highlight the guiding ethical principles and stakeholder considerations in resuming genetic services to help guide the competing needs going forward of both limiting exposures while maintaining high-quality care. Considerations highlighted are (1) environment of practice, (2) nature of consult, (3) patient factors, (4) provider factors, and (5) laboratory factors. The intended users are those providing genetic care in a Canadian context with the recognition that there are clinic-specific and regional variations that will influence decision-making. While specific to the Canadian context, the ethical principles used to guide these decisions would be relevant for consideration in other jurisdictions.
新冠疫情扰乱了加拿大的基因医疗服务。为了实现公共卫生领域的曲线平缓目标，许多诊所已转向为部分患者群体提供虚拟医疗服务，同时对其他患者进行分类和推迟治疗。随着基因服务被要求逐步恢复，需要一个路线图来确保针对高危患者的临床护理决策透明且公平，确保推迟的护理得以恢复，以及确保患有或正在等待基因诊断的患者不会受到不成比例的影响或被遗弃。本文档的目的是强调恢复基因服务时的指导伦理原则和利益相关者考量因素，以帮助指导未来在限制接触风险的同时维持高质量护理这两个相互竞争的需求。所强调的考量因素包括：（1）执业环境，（2）咨询性质，（3）患者因素，（4）提供者因素，以及（5）实验室因素。目标用户是在加拿大提供基因医疗服务的人员，同时认识到存在会影响决策的特定诊所和地区差异。虽然本文档特定于加拿大的情况，但用于指导这些决策的伦理原则在其他司法管辖区也值得考虑。
