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Supportive/Substitute Decision-making and Capacity in Victoria: Compliance with Australia's Obligations under the CRPD? 维多利亚州的辅助/替代决策与能力:澳大利亚是否履行了《残疾人权利公约》规定的义务?
Q2 LAW Pub Date : 2023-12-01
Rohan Wee

The Convention on the Rights of Persons with Disabilities (CRPD) restates human rights through the lens of disability. One of the key rights relates to equality before the law. This has been interpreted as requiring the abolition of substitute decision-making regimes. As a signatory, Australia has agreed to implement the rights set out in the CRPD. In Australia, the laws relating to substitute decision-making and legal capacity vary from State to State. This article examines how the laws in Victoria compare to Australia's CRPD obligations and, hence, whether Victoria is compliant with or in breach of the CRPD. It concludes that, while on the surface Victoria is in breach of Australia's CRPD obligations, Victorian legislation is making significant efforts to operationalise a human rights approach to decision-making.

残疾人权利公约》(CRPD)从残疾的角度重申了人权。其中一项关键权利涉及法律面前人人平等。这被解释为要求废除替代决策制度。作为签署国,澳大利亚已同意落实《残疾人权利公约》中规定的各项权利。澳大利亚各州有关替代决策和法律行为能力的法律各不相同。本文探讨了维多利亚州的法律与澳大利亚在《残疾人权利公约》中所承担的义务之间的比较,从而探讨维多利亚州是遵守还是违反了《残疾人权利公约》。文章的结论是,虽然从表面上看维多利亚州违反了澳大利亚在《残疾人权利公约》方面的义务,但维多利亚州的立法正在做出重大努力,将人权方法应用于决策。
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引用次数: 0
What Legal Frameworks Should Govern Use of Genetic Test Results by Private Health Insurers in New Zealand? 新西兰私人医疗保险公司使用基因检测结果应遵循哪些法律框架?
Q2 LAW Pub Date : 2023-12-01
Hanne Janes

The rising cost of private health insurance and constraints within public health systems are global concerns. Genetic testing presents a transformative opportunity for health care to enhance health outcomes and optimise resource allocation through personalised medicine, early diagnosis, targeted treatments, managed care, and improved drug development. However, ethical and policy issues arise, including privacy, discrimination and equitable access to testing. Balancing these against potential health benefits poses a complex challenge. While some advocate for restricting health insurers from using genetic data, others argue that well-regulated private insurance can ensure affordability, improved health outcomes, and innovative care adoption. This article explores examples of improved health outcomes through genetic testing, identifies areas of risk related to insurers' use of genetic data, evaluates the adequacy of New Zealand's legal framework, and emphasises the need for ethical and equitable policy solutions. The broader issues of data governance, biases in algorithms, and implications of artificial intelligence and machine learning warrant separate exploration.

私人医疗保险成本的上升和公共卫生系统的限制是全球关注的问题。基因检测为医疗保健提供了一个变革性的机会,通过个性化医疗、早期诊断、针对性治疗、管理性医疗和改进药物开发,提高医疗效果并优化资源分配。然而,伦理和政策问题也随之而来,包括隐私、歧视和公平接受检测。如何在这些问题与潜在的健康益处之间取得平衡是一项复杂的挑战。一些人主张限制医疗保险公司使用基因数据,而另一些人则认为,监管良好的私人保险可以确保人们能够负担得起,改善健康状况,并采用创新的护理方式。本文探讨了通过基因检测改善健康结果的实例,确定了与保险公司使用基因数据相关的风险领域,评估了新西兰法律框架的适当性,并强调了道德和公平政策解决方案的必要性。数据管理、算法中的偏见以及人工智能和机器学习的影响等更广泛的问题值得单独探讨。
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引用次数: 0
Is Intellectual Property the COVID-19 Bad Guy? Lessons We Could Learn from the Pandemic. 知识产权是 COVID-19 的坏人吗?我们可以从大流行病中学到的教训。
Q2 LAW Pub Date : 2023-12-01
Charles Lawson

At the time the COVID-19 pandemic was declared there was no vaccine and other medical products were insufficient to meet demands. At the time intellectual property was considered a limitation to an effective pandemic response and the World Trade Organization considered a waiver of intellectual property addressed by the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS). The lesson from the COVID-19 pandemic and TRIPS waiver is that given enough time sufficient medical products will be delivered, albeit there remain some complicated delivery challenges and vaccine hesitancy issues. This column addresses the moment before that medical product saturation and the inherent limitation imposed by industry policies. The column concludes that the private sectors' motivating factors need to be integrated into the design of global public health pandemic responses from the start.

在宣布 COVID-19 大流行时,还没有疫苗,其他医疗产品也不足以满足需求。当时,知识产权被认为是有效应对大流行病的一个限制因素,世界贸易组织考虑放弃《与贸易有关的知识产权协议》(TRIPS)规定的知识产权。从 COVID-19 大流行和《与贸易有关的知识产权协议》豁免中得到的教训是,只要有足够的时间,就能提供足够的医疗产品,尽管仍然存在一些复杂的交付挑战和疫苗犹豫不决的问题。本专栏探讨了医疗产品饱和之前的时刻以及行业政策所带来的固有限制。本专栏的结论是,需要从一开始就将私营部门的激励因素纳入全球公共卫生大流行病应对措施的设计中。
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引用次数: 0
They Can Have Our Cake - But Can We Eat It? Access to Raw Genomic Data under Australian Privacy Law. 他们可以吃我们的蛋糕--但我们能吃它吗?根据澳大利亚隐私法获取原始基因组数据。
Q2 LAW Pub Date : 2023-12-01
Carolyn Johnston, Jane Nielsen, Mark J Cowley, Rebekah McWhirter, Margaret Otlowski

There is an increasing demand for the return of raw genomic data by research participants in translational genomic research. This article discusses the scope and application of privacy and freedom of information legislative provisions in Australia. Whether there is a right to access a copy of such data under Australian privacy legislation is contingent on whether raw genomic data can identify an individual and this article explores the opportunities for genomic data to be linked to individuals. We conclude that despite the complexity and overlapping nature of privacy laws in Australia, there is a clear right on the part of research participants to access their raw genomic data.

在转化基因组研究中,研究参与者要求归还原始基因组数据的呼声日益高涨。本文讨论了澳大利亚隐私和信息自由法律条款的范围和适用。根据澳大利亚隐私立法,是否有权获取此类数据的副本取决于原始基因组数据是否能识别个人,本文探讨了基因组数据与个人关联的机会。我们的结论是,尽管澳大利亚的隐私法复杂且相互重叠,但研究参与者显然有权获取其原始基因组数据。
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引用次数: 0
Key Informant Perspectives on Barriers to Advance Personal Planning: Results from a Qualitative Interview Study. 关键信息提供者对预先个人规划障碍的看法:定性访谈研究的结果。
Q2 LAW Pub Date : 2023-12-01
Briony Johnston, Nola M Ries, Amy Waller

Advance Care Planning (ACP) relates to the process of thinking about, discussing, and potentially documenting future wishes and preferences relating to personal and health matters. Existing literature has explored ACP from the perspective of health care professionals and older people. However, data exploring the broader process of Advance Personal Planning (APP), which also accounts for plans relating to legal and financial matters, are limited. This article reports on an interview study that explored barriers to APP engagement, factors influencing the quality and future use of instruments, and opportunities for improving APP processes for older adults from the perspectives of key informants working in the fields of law, health, and aged care. Data were coded in NVivo and analysed thematically. Opportunities for improvement include education, normalising conversations, integration into usual practice, and reform. Recommendations are made at professional, community, and structural levels, with the aim of improving APP outcomes for all involved.

预先护理规划(Advance Care Planning,ACP)是指对未来与个人和健康事务相关的愿望和偏好进行思考、讨论和记录的过程。现有文献从医疗保健专业人员和老年人的角度对 ACP 进行了探讨。然而,探讨更广泛的 "预先个人规划"(Advance Personal Planning,APP)过程的数据却很有限。本文报告了一项访谈研究,该研究从法律、健康和老年护理领域的主要信息提供者的角度,探讨了参与 APP 的障碍、影响工具质量和未来使用的因素,以及改进老年人 APP 流程的机会。数据由 NVivo 进行编码,并按主题进行分析。改进的机会包括教育、对话正常化、融入常规实践以及改革。在专业、社区和结构层面提出了建议,旨在为所有相关人员改善 APP 成果。
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引用次数: 0
Access to Justice: The Quest for a Right of Appeal in New Zealand's Health and Disability Commissioner Complaints Scheme. 诉诸司法:新西兰卫生和残疾事务专员投诉计划中上诉权的寻求》。
Q2 LAW Pub Date : 2023-12-01
Joanna Manning

Given the absence of a civil damages action for personal injury in New Zealand, its Health and Disability Commissioner's (HDC) complaints process occupies a pivotal role in its medico-legal arrangements. Much hope was invested in it, but as currently configured, the regime is incapable of delivering justice or fulfilling its legislative purpose in a good number of cases. Many hundreds of complaints per annum, in which there is a strongly arguable case of deficient conduct or more than a mild departure from acceptable standards and in which a serious outcome has resulted, are not fully investigated; and there is no mechanism to appeal an adverse HDC decision that a party considers substantively unfair. Recent criticism of these issues by courts, the Chief Ombudsman, and commentators has mounted, and a petition to Parliament seeking legislative reform to create a right to appeal from adverse HDC decisions resulted in referral of the issue to the Commissioner to consider in an upcoming review, but hoped-for reform will not happen quickly.

由于新西兰没有针对人身伤害的民事损害赔偿诉讼,其健康与残疾事务专员的投诉程序在其医疗法律安排中占据着举足轻重的地位。人们曾对其寄予厚望,但从目前的配置来看,该制度在许多案件中无法伸张正义或实现其立法目的。每年都有数以百计的投诉没有得到充分调查,而在这些投诉中,有充分理由证明存在行为缺陷或轻微偏离了可接受的标准,并导致了严重的结果。最近,法院、首席申诉专员和评论员对这些问题提出了越来越多的批评,有人向议会提出请愿,要求进行立法改革,以建立对住房与发展委员会的不利决定提出上诉的权利。
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引用次数: 0
Interdisciplinary Collaboration in the Mental Health Sector: Legislating the Victorian Collaborative Centre for Mental Health and Wellbeing. 心理健康部门的跨学科合作:维多利亚州心理健康与幸福合作中心的立法。
Q2 LAW Pub Date : 2023-12-01
Bernadette McSherry

This column explores how the law might support interdisciplinary collaboration in research and practice in the mental health sector. It provides an overview of the Victorian Collaborative Centre for Mental Health and Wellbeing which was established by statute to support collaboration across multiple disciplines and services for the benefit of mental health consumers. It suggests that interdisciplinary collaboration, which has the lived experience and knowledge of mental health consumers at its heart, has the potential for transformative and beneficial systemic change.

本专栏探讨法律如何支持心理健康领域研究与实践的跨学科合作。它概述了维多利亚州心理健康与福祉合作中心(Victorian Collaborative Centre for Mental Health and Wellbeing)的情况,该中心是根据法律成立的,旨在支持跨学科合作和服务,以造福于心理健康消费者。它表明,以心理健康消费者的生活经验和知识为核心的跨学科合作有可能带来变革性的、有益的系统性变化。
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引用次数: 0
Legislating the Cause of Death: "What's in a Name …". 死因立法:"名字里有什么......"。
Q2 LAW Pub Date : 2023-12-01
David Ranson

In recent years legal rules to regulate causes of death have begun to appear. One example of this relates to the term "excited delirium" which has been subject to challenge by medical and legal professionals. Human rights activists have pushed against its usage by law enforcement and medical death investigators. The passing of the California Assembly Bill 360 restricting the use of the term is an example of this. Legislatively mandating, or banning causes of death poses an interesting challenge for death investigators. The lack of uniform guidance on how deaths should be classified across different jurisdictions and the variations in linguistic and causation-based language in cause of death statements may have influenced this development. Legislation that seeks to enforce ways of documenting the cause of a death, which is in effect an expert medical opinion, presents significant future challenges in expert testimony.

近年来,规范死亡原因的法律规则开始出现。其中一个例子与 "兴奋性谵妄 "一词有关,该词一直受到医学和法律专业人士的质疑。人权活动家反对执法部门和医学死亡调查人员使用该术语。加利福尼亚州议会通过的限制使用该术语的第 360 号法案就是一个例子。立法规定或禁止死因给死亡调查人员带来了有趣的挑战。不同司法管辖区在如何对死亡进行分类方面缺乏统一指导,死因声明中的语言和基于因果关系的语言也各不相同,这些都可能影响了这一发展。立法试图强制执行记录死因的方式,这实际上是一种专家医学意见,为专家证词带来了重大的未来挑战。
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引用次数: 0
"Missing Persons": Absent Voices of People with Dementia in the Australian Royal Commission into Aged Care. "失踪人员":澳大利亚皇家老年护理委员会中失智症患者缺席的声音。
Q2 LAW Pub Date : 2023-12-01
Kristina Chelberg, Kate Swaffer

This article argues the voice of people with dementia was missing from the Australian Royal Commission into Aged Care Quality and Safety (RCAC) Final Report. This absence was notwithstanding that the RCAC was explicitly tasked to inquire into dementia care. The RCAC Final Report is shown to marginalise the perspective and experience of people with dementia in the aged care system at the same time as prioritising substitute voices of experts, advocates, family and care partners. This absence of voice repeats and re-inscribes framing of people with dementia as "missing persons". Where people with dementia face practical and legal barriers to participate in civic and legal processes, the RCAC failed to adjust its methodologies to ensure their voices were "heard". The RCAC's re-inscription of marginalisation of people with dementia raises concerns for the legitimacy and success of its recommendations for dementia aged care reform.

本文认为,《澳大利亚皇家老年护理质量与安全委员会(RCAC)最终报告》中缺少痴呆症患者的声音。尽管皇家老年护理质量与安全委员会的明确任务是调查痴呆症护理问题,但报告中却没有提及痴呆症患者的声音。事实表明,皇家委员会的《最终报告》将老年护理系统中痴呆症患者的观点和经历边缘化,同时优先考虑专家、倡导者、家人和护理合作伙伴的替代声音。这种声音的缺失重复并重新将痴呆症患者定格为 "失踪者"。当痴呆症患者在参与公民和法律程序时面临实际和法律障碍时,RCAC 未能调整其方法以确保他们的声音被 "听到"。RCAC 将痴呆症患者边缘化的做法令人担忧其提出的痴呆症老年护理改革建议的合法性和成功性。
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引用次数: 0
Between Public and Private: Electronic Health Record-sharing, Health Privacy Principles, and Hepatitis C. 公私之间:电子健康记录共享、健康隐私原则和丙型肝炎。
Q2 LAW Pub Date : 2023-12-01
Sean Mulcahy, Emily Lenton, Kate Seear, Kylie Valentine, Dion Kagan, Adrian Farrugia, Michael Edwards, Danny Jeffcote

People with (a history of) hepatitis C have concerns about privacy and the confidentiality of their health information. This is often due to the association between hepatitis C and injecting drug use and related stigma. In Australia, recent data breaches at a major private health insurer and legislative reforms to increase access to electronic health records have heightened these concerns. Drawing from interviews with people with lived experience of hepatitis C and stakeholders working in this area, this article explores the experiences and concerns of people with (a history of) hepatitis C in relation to the sharing of their health records. It considers the potential application of health privacy principles in the context of hepatitis C and argues for the development of guidelines concerning the privacy of health records held by health departments and public hospitals. Such principles might also inform reforms to legislation regarding access to health records.

丙型肝炎患者(有丙型肝炎病史)对其健康信息的隐私和保密性感到担忧。这通常是由于丙型肝炎与注射吸毒之间的联系以及相关的耻辱感造成的。在澳大利亚,一家大型私人医疗保险公司最近发生的数据泄露事件,以及为增加电子健康记录访问权限而进行的立法改革,都加剧了人们的这种担忧。本文通过对丙型肝炎患者和该领域利益相关者的访谈,探讨了丙型肝炎(病史)患者在共享健康记录方面的经历和担忧。文章考虑了健康隐私原则在丙型肝炎背景下的潜在应用,并主张制定有关卫生部门和公立医院所持健康记录隐私的指导方针。这些原则还可以为有关健康记录获取的立法改革提供参考。
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引用次数: 0
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Journal of Law and Medicine
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