Saich Freya, Walker Shelley, Hellard Margaret, Stoové Mark, Seear Kate
Burnet Institute.
Burnet Institute; Curtin University; Monash University.
Public Health Ethics. 2024 May 17;17(1-2):40-52. doi: 10.1093/phe/phae006. eCollection 2024 Apr-Jul.
Hepatitis C is a global public health threat, affecting 56 million people worldwide. The World Health Organization has committed to eliminating hepatitis C by 2030. Although new treatments have revolutionised the treatment and care of people with hepatitis C, treatment uptake has slowed in recent years, drawing attention to the need for innovative approaches to reach elimination targets. One approach involves using existing notifiable disease data to contact people previously diagnosed with hepatitis C. Within these disease surveillance systems, however, competing tensions exist, including protecting individual rights to privacy and autonomy, and broader public health goals. We explore these issues using hepatitis C and Australia's legislative and regulatory frameworks as a case study. We examine emerging uses of notification data to contact people not yet treated, and describe some of the ethical dilemmas associated with the use and non-use of this data and the protections that exist to preserve individual rights and public health. We reveal weaknesses in rights protections and processes under Australian public health and human rights legislation and argue for consultation with and involvement of affected communities in policy and intervention design before notification data is used to increase hepatitis C treatment coverage.
丙型肝炎是一项全球性的公共卫生威胁，全球有5600万人受其影响。世界卫生组织已致力于到2030年消除丙型肝炎。尽管新疗法彻底改变了丙型肝炎患者的治疗和护理方式，但近年来治疗的接受率有所放缓，这凸显了需要采用创新方法来实现消除目标。一种方法是利用现有的应报告疾病数据来联系先前被诊断为丙型肝炎的人。然而，在这些疾病监测系统中，存在相互冲突的紧张关系，包括保护个人的隐私和自主权以及更广泛的公共卫生目标。我们以丙型肝炎和澳大利亚的立法及监管框架为例探讨这些问题。我们研究利用报告数据联系尚未接受治疗者的新用途，并描述与使用和不使用这些数据相关的一些伦理困境以及为维护个人权利和公共卫生而存在的保护措施。我们揭示了澳大利亚公共卫生和人权立法下权利保护及程序的弱点，并主张在利用报告数据提高丙型肝炎治疗覆盖率之前，与受影响社区进行协商并让其参与政策和干预措施的设计。
