Influencers are content creators who post online about their lives and can amass a significant following. Influencers can be dangerous by negatively affecting their followers' body image and marketing products in a deceptive way. The limited academic writings which consider influencer regulation note an incongruency between influencer conduct and the corresponding regulatory system. This has been recognised by the Australian Competition and Consumer Commission which has flagged potential reforms. Similarly, the United Kingdom is conducting a review in response to comparable issues and developing draft legislation, while France has introduced new laws to regulate the sector. This article capitalises on the current appetite for legislative reform and proposes to analyse the adequacy of the current regulatory framework for influencers with respect to protecting vulnerable consumers and provides recommendations for reform.
有影响力的人是那些在网上发布自己生活的内容创造者,他们可以聚集大量的追随者。网红可能是危险的,因为他们会对粉丝的身体形象产生负面影响,并以欺骗的方式营销产品。考虑网红监管的有限学术著作注意到网红行为与相应监管体系之间的不一致。澳大利亚竞争与消费者委员会(Australian Competition and Consumer Commission)已经认识到这一点,并提出了可能的改革。同样,联合王国正在针对类似的问题进行审查,并拟订立法草案,而法国则提出了管理该部门的新法律。本文利用当前对立法改革的需求,建议分析当前对影响者的监管框架在保护弱势消费者方面的充分性,并提供改革建议。
{"title":"'Truly, Madly, Deeply': Using Law to Compel Health and Lifestyle Influencers to Tell the Truth.","authors":"Aaron Salter, Marilyn Bromberg","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Influencers are content creators who post online about their lives and can amass a significant following. Influencers can be dangerous by negatively affecting their followers' body image and marketing products in a deceptive way. The limited academic writings which consider influencer regulation note an incongruency between influencer conduct and the corresponding regulatory system. This has been recognised by the Australian Competition and Consumer Commission which has flagged potential reforms. Similarly, the United Kingdom is conducting a review in response to comparable issues and developing draft legislation, while France has introduced new laws to regulate the sector. This article capitalises on the current appetite for legislative reform and proposes to analyse the adequacy of the current regulatory framework for influencers with respect to protecting vulnerable consumers and provides recommendations for reform.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 3","pages":"561-586"},"PeriodicalIF":0.6,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142956187","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This article analyses qualitative empirical research conducted by this author to gain a deeper understanding of the rationale behind conscientious objection (CO) to voluntary assisted dying (VAD) and its impact on the operation of VAD in Victoria, Australia. It begins by providing an overview of the Australian legal approach to CO in the context of VAD. It then discusses the spectrum of attitudes that exist towards VAD, illuminating some of the nuance and complexity of the individual and institutional approaches. The article then focuses on the reasons behind CO, noting that there are a range of moral reasons why people may oppose VAD. Finally, the article turns to consider the impact of CO on patient access to VAD, concluding that CO is affecting patient access in Victoria, and that Victoria should modify its legal approach so as to balance the right to CO more appropriately against the legal right to access VAD.
{"title":"Voluntary Assisted Dying and Conscientious Objection: An Analysis from Victoria, Australia.","authors":"Ronli Sifris","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>This article analyses qualitative empirical research conducted by this author to gain a deeper understanding of the rationale behind conscientious objection (CO) to voluntary assisted dying (VAD) and its impact on the operation of VAD in Victoria, Australia. It begins by providing an overview of the Australian legal approach to CO in the context of VAD. It then discusses the spectrum of attitudes that exist towards VAD, illuminating some of the nuance and complexity of the individual and institutional approaches. The article then focuses on the reasons behind CO, noting that there are a range of moral reasons why people may oppose VAD. Finally, the article turns to consider the impact of CO on patient access to VAD, concluding that CO is affecting patient access in Victoria, and that Victoria should modify its legal approach so as to balance the right to CO more appropriately against the legal right to access VAD.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 3","pages":"539-554"},"PeriodicalIF":0.6,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142956346","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The framing of patients making decisions about their medical treatment and care as traditional legal decisions, thresholds and formalities is a means to avoid legal liabilities through a rationalisation of decision-making, autonomy and choice. A credible account for the actual place of patients posits the sovereign power (founded in the works of Carl Schmitt and Giorgio Agamben) of the health care professional deciding the state of exception - a discrete legal space where the authority of health care professionals is both lawful and beyond the law. This reveals that dealing with broadly conceived consent issues with more law, more process and procedure but without addressing the inherent legality assumptions that empower health care professionals will always be flawed. This section piece concludes that the resolution of consent issues is about a culture of consent rather than a frame of legal process and limiting legal liability.
{"title":"Decisions about Medical Treatment and Care, the Legality Assumptions and Sovereign Power - Empowering Patients Out of the State of Bare Life?","authors":"Charles Lawson, Edwin Bikundo, Laurie Grealish, Todd Berry, Jayne Hewitt, Jo-Anne Todd","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The framing of patients making decisions about their medical treatment and care as traditional legal decisions, thresholds and formalities is a means to avoid legal liabilities through a rationalisation of decision-making, autonomy and choice. A credible account for the actual place of patients posits the sovereign power (founded in the works of Carl Schmitt and Giorgio Agamben) of the health care professional deciding the state of exception - a discrete legal space where the authority of health care professionals is both lawful and beyond the law. This reveals that dealing with broadly conceived consent issues with more law, more process and procedure but without addressing the inherent legality assumptions that empower health care professionals will always be flawed. This section piece concludes that the resolution of consent issues is about a culture of consent rather than a frame of legal process and limiting legal liability.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 3","pages":"483-504"},"PeriodicalIF":0.6,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142956532","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christopher Brook, Peter Trembath, Kerry J Breen, Jonathan Burdon
Cough syncope is an uncommon but well-recognised medical condition diagnosed primarily on the history provided by the sufferer. In situations where the sufferer is in control of a motor vehicle, syncope can lead to accidents involving death and injury. In the medico-legal setting, cough syncope can be a contested cause of such accidents. Here we report two recent Australian cases which illustrate the issues involved for legal and medical practitioners.
{"title":"Cough Syncope and Fatal Motor Vehicle Accidents: Two Australian Cases.","authors":"Christopher Brook, Peter Trembath, Kerry J Breen, Jonathan Burdon","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Cough syncope is an uncommon but well-recognised medical condition diagnosed primarily on the history provided by the sufferer. In situations where the sufferer is in control of a motor vehicle, syncope can lead to accidents involving death and injury. In the medico-legal setting, cough syncope can be a contested cause of such accidents. Here we report two recent Australian cases which illustrate the issues involved for legal and medical practitioners.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 3","pages":"555-560"},"PeriodicalIF":0.6,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142956525","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Euthanasia in the form of Voluntary Assisted Dying (VAD) is legal in all Australian States, but current eligibility criteria preclude access to people with dementia. This article discusses Australian VAD eligibility criteria that are problematic for people with dementia: (1) time until death within 12 months, (2) decision-making capacity for VAD, and (3) determination of intolerable suffering. Legislation in the Netherlands allows VAD for people with dementia. The challenges and philosophical issues raised by such cases are explored. It is proposed that the unique nature of dementia in its various forms warrants the formulation of dementia-specific VAD eligibility criteria. A case could be brought to challenge the denial of access to VAD of people with dementia on the basis that their exclusion is discriminatory and an abuse of human rights. If such a challenge was successful, it could form a common law precedent to allow people with dementia access to VAD.
以自愿协助死亡(VAD)形式进行的安乐死在澳大利亚各州都是合法的,但目前的资格标准却不允许痴呆症患者使用。本文讨论了澳大利亚对痴呆症患者而言存在问题的 VAD 资格标准:(1)12 个月内的死亡时间,(2)VAD 的决策能力,以及(3)无法忍受的痛苦的判定。荷兰的立法允许对痴呆症患者进行 VAD。本文探讨了此类案例带来的挑战和哲学问题。建议根据痴呆症各种形式的独特性质,制定痴呆症专用的 VAD 资格标准。对于拒绝向痴呆症患者提供自愿性评估的做法,可以提出质疑,理由是将他们排除在外是一种歧视和对人权的践踏。如果这种质疑成功,就可以形成普通法先例,允许痴呆症患者获得自愿性评估。
{"title":"Denial of Desire for Death in Dementia: Why Is Dementia Excluded from Australian Voluntary Assisted Dying Legislation?","authors":"Amee Baird","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Euthanasia in the form of Voluntary Assisted Dying (VAD) is legal in all Australian States, but current eligibility criteria preclude access to people with dementia. This article discusses Australian VAD eligibility criteria that are problematic for people with dementia: (1) time until death within 12 months, (2) decision-making capacity for VAD, and (3) determination of intolerable suffering. Legislation in the Netherlands allows VAD for people with dementia. The challenges and philosophical issues raised by such cases are explored. It is proposed that the unique nature of dementia in its various forms warrants the formulation of dementia-specific VAD eligibility criteria. A case could be brought to challenge the denial of access to VAD of people with dementia on the basis that their exclusion is discriminatory and an abuse of human rights. If such a challenge was successful, it could form a common law precedent to allow people with dementia access to VAD.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 2","pages":"386-402"},"PeriodicalIF":0.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499265","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
All Australian jurisdictions have statutory provisions governing the use of electroconvulsive therapy. Cases in which the patient lacks insight into their psychotic illness and need for treatment and refuses to have ECT are particularly poignant. In Re ICO [2023] QMHC 1, the Queensland Mental Health Court considered whether a patient with a treatment-resistant psychotic illness had decision-making capacity to refuse ECT. The Court also considered whether the patient had been provided with an adequate explanation of the proposed treatment including the expected benefits, risks and adverse effects of ECT. As well as deciding whether ECT was appropriate in the circumstances, the Court considered whether there were alternative treatments including another trial of the oral antipsychotic clozapine. This article reviews issues relating to lack of insight in persons with psychotic illness and relevant considerations for determining capacity to decline ECT.
澳大利亚所有司法管辖区都有关于使用电休克疗法的法律规定。病人对自己的精神病和治疗需求缺乏洞察力,拒绝接受电休克疗法的案例尤其令人痛心。在 Re ICO [2023] QMHC 1 一案中,昆士兰州精神卫生法院考虑了一名患有难治性精神病的患者是否具有拒绝电痉挛疗法的决策能力。法院还考虑了是否向患者充分解释了拟议的治疗,包括电痉挛疗法的预期益处、风险和不良反应。在决定电痉挛疗法在当时的情况下是否合适的同时,法院还考虑了是否有替代治疗方法,包括再次试用口服抗精神病药物氯氮平。本文回顾了与精神病患者缺乏洞察力有关的问题,以及在确定是否有能力拒绝电痉挛疗法时的相关考虑因素。
{"title":"Insight and the Capacity to Refuse Treatment with Electroconvulsive Therapy.","authors":"Russ Scott, Steve Prowacki","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>All Australian jurisdictions have statutory provisions governing the use of electroconvulsive therapy. Cases in which the patient lacks insight into their psychotic illness and need for treatment and refuses to have ECT are particularly poignant. In Re ICO [2023] QMHC 1, the Queensland Mental Health Court considered whether a patient with a treatment-resistant psychotic illness had decision-making capacity to refuse ECT. The Court also considered whether the patient had been provided with an adequate explanation of the proposed treatment including the expected benefits, risks and adverse effects of ECT. As well as deciding whether ECT was appropriate in the circumstances, the Court considered whether there were alternative treatments including another trial of the oral antipsychotic clozapine. This article reviews issues relating to lack of insight in persons with psychotic illness and relevant considerations for determining capacity to decline ECT.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 2","pages":"273-323"},"PeriodicalIF":0.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499267","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Dianne Nicol, Margaret Otlowski, Keeley Reade, Natalie Thorne, Clara Gaff
This section explores the challenges involved in translating genomic research into genomic medicine. A number of priorities have been identified in the Australian National Health Genomics Framework for addressing these challenges. Responsible collection, storage, use and management of genomic data is one of these priorities, and is the primary theme of this section. The recent release of Genomical, an Australian data-sharing platform, is used as a case study to illustrate the type of assistance that can be provided to the health care sector in addressing this priority. The section first describes the National Framework and other drivers involved in the move towards genomic medicine. The section then examines key ethical, legal and social factors at play in genomics, with particular focus on privacy and consent. Finally, the section examines how Genomical is being used to help ensure that the move towards genomic medicine is ethically, legally and socially sound and that it optimises advances in both genomic and information technology.
本节探讨了将基因组研究转化为基因组医学所面临的挑战。澳大利亚国家健康基因组学框架》(Australian National Health Genomics Framework)确定了应对这些挑战的若干优先事项。负责任地收集、存储、使用和管理基因组数据是这些优先事项之一,也是本节的主要主题。本节以最近发布的澳大利亚数据共享平台 Genomical 为案例,说明可为医疗保健部门提供哪些类型的援助,以解决这一优先事项。本节首先介绍了《国家框架》和其他推动基因组医学发展的因素。然后,本节探讨了基因组学中的关键伦理、法律和社会因素,尤其关注隐私和同意问题。最后,本节探讨了如何利用 Genomical 来帮助确保基因组医学的发展在伦理、法律和社会方面都是合理的,并能优化基因组和信息技术的进步。
{"title":"Moving Genomics into the Clinic: Platforms for Implementing Clinical Genomic Data-Sharing in Ways That Address Ethical, Legal and Social Implications.","authors":"Dianne Nicol, Margaret Otlowski, Keeley Reade, Natalie Thorne, Clara Gaff","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>This section explores the challenges involved in translating genomic research into genomic medicine. A number of priorities have been identified in the Australian National Health Genomics Framework for addressing these challenges. Responsible collection, storage, use and management of genomic data is one of these priorities, and is the primary theme of this section. The recent release of Genomical, an Australian data-sharing platform, is used as a case study to illustrate the type of assistance that can be provided to the health care sector in addressing this priority. The section first describes the National Framework and other drivers involved in the move towards genomic medicine. The section then examines key ethical, legal and social factors at play in genomics, with particular focus on privacy and consent. Finally, the section examines how Genomical is being used to help ensure that the move towards genomic medicine is ethically, legally and socially sound and that it optimises advances in both genomic and information technology.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 2","pages":"258-272"},"PeriodicalIF":0.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499269","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Victoria has new legislation, the Mental Health and Wellbeing Act 2022 (Vic) (MHWA) to govern the care and treatment of people with mental illness that came into effect on 1 September 2023. It takes a human rights approach with a focus on person-centred care. The definition of mental illness encompasses conditions such as dementia even though it is rarely used to manage such conditions. How would the management of dementia and associated conditions change if these conditions were managed under the MHWA? This article uses dementia to examine the differences between the new MHWA, the Medical Treatment Planning and Decisions Act 2016 (Vic) and the Guardianship and Administration Act 2019 (Vic) and how the human rights approach taken by the MHWA might inform future directions in managing dementia.
{"title":"Neurocognitive Disorders: Medical Illness or Mental Disorder: Examining the Mental Health and Wellbeing Act 2022 (Vic) Using Neurocognitive Disorders.","authors":"Rohan Wee","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Victoria has new legislation, the Mental Health and Wellbeing Act 2022 (Vic) (MHWA) to govern the care and treatment of people with mental illness that came into effect on 1 September 2023. It takes a human rights approach with a focus on person-centred care. The definition of mental illness encompasses conditions such as dementia even though it is rarely used to manage such conditions. How would the management of dementia and associated conditions change if these conditions were managed under the MHWA? This article uses dementia to examine the differences between the new MHWA, the Medical Treatment Planning and Decisions Act 2016 (Vic) and the Guardianship and Administration Act 2019 (Vic) and how the human rights approach taken by the MHWA might inform future directions in managing dementia.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 2","pages":"421-437"},"PeriodicalIF":0.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499270","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
South Australia's Voluntary Assisted Dying Act 2021 commenced operation on 31 January 2023. However, ss 474.29A and 474.29B of the Criminal Code Act 1995 (Cth) prohibit the use of "carriage services" to promote or provide instructions about suicide and may impede access to voluntary assisted dying (VAD). Attempts to clarify whether VAD is suicide have been unsuccessful and doctors risk prosecution if they use telehealth to participate in VAD. This article examines specific steps in the VAD pathway that are likely to breach the federal law. Although there have been attempts to clarify what information can permissibly be discussed using a carriage service, doctors risk breaching the federal law at multiple stages of the VAD process. This article concludes arguing that this conflict of laws must be resolved and calls upon the Commonwealth Government to amend the Criminal Code to exclude VAD from the definition of suicide.
南澳大利亚州的《2021 年自愿协助死亡法》于 2023 年 1 月 31 日开始实施。然而,《1995 年刑法法案》(澳大利亚联邦)第 474.29A 和 474.29B 条禁止使用 "运输服务 "宣传或提供自杀指导,这可能会阻碍自愿协助死亡(VAD)的获得。试图澄清自愿协助死亡是否属于自杀的努力一直未获成功,医生如果使用远程医疗参与自愿协助死亡,将面临被起诉的风险。本文探讨了 VAD 过程中可能违反联邦法律的具体步骤。尽管已经试图澄清哪些信息可以允许使用车载服务进行讨论,但医生在自愿去死(VAD)过程的多个阶段都有可能违反联邦法律。本文最后指出,这种法律冲突必须得到解决,并呼吁联邦政府修订《刑法典》,将 VAD 排除在自杀定义之外。
{"title":"The Commonwealth Criminal Code: Will It Restrict Access to Voluntary Assisted Dying in South Australia And Is There a Way Forward?","authors":"Julia Matteo, Michaela Okninski","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>South Australia's Voluntary Assisted Dying Act 2021 commenced operation on 31 January 2023. However, ss 474.29A and 474.29B of the Criminal Code Act 1995 (Cth) prohibit the use of \"carriage services\" to promote or provide instructions about suicide and may impede access to voluntary assisted dying (VAD). Attempts to clarify whether VAD is suicide have been unsuccessful and doctors risk prosecution if they use telehealth to participate in VAD. This article examines specific steps in the VAD pathway that are likely to breach the federal law. Although there have been attempts to clarify what information can permissibly be discussed using a carriage service, doctors risk breaching the federal law at multiple stages of the VAD process. This article concludes arguing that this conflict of laws must be resolved and calls upon the Commonwealth Government to amend the Criminal Code to exclude VAD from the definition of suicide.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 2","pages":"343-352"},"PeriodicalIF":0.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499295","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Until the discovery of the gene for cystic fibrosis (CF) in 1989, diagnostic developments were limited, and treatment focused on symptom alleviation. However, following the genetic breakthrough, some 2,000 mutations of the gene have been identified. More recently CF transmembrane conductance regulator modulator triple therapy (CFTRm) has been introduced in the form of triple therapy with ivacaftor, lumacaftor and tezacaftor (ETI), in the United States from 2019, Europe from 2020 and then Australia from 2021. The new treatment option has revolutionised both the quality of life and life expectancy of many persons diagnosed with CF. This editorial reviews major developments in the clinical care that can now be provided to patients, and reflects on the legal and ethical ramifications of the improved situation for many patients in the contexts of medical negligence, damages assessment, family law and criminal law. It also considers the difficult issues of access and equity caused by the limited availability of the triple therapy in low- and middle-income countries.
{"title":"Cystic Fibrosis and the Law: The Ramifications of New Treatments.","authors":"Ian Freckelton","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Until the discovery of the gene for cystic fibrosis (CF) in 1989, diagnostic developments were limited, and treatment focused on symptom alleviation. However, following the genetic breakthrough, some 2,000 mutations of the gene have been identified. More recently CF transmembrane conductance regulator modulator triple therapy (CFTRm) has been introduced in the form of triple therapy with ivacaftor, lumacaftor and tezacaftor (ETI), in the United States from 2019, Europe from 2020 and then Australia from 2021. The new treatment option has revolutionised both the quality of life and life expectancy of many persons diagnosed with CF. This editorial reviews major developments in the clinical care that can now be provided to patients, and reflects on the legal and ethical ramifications of the improved situation for many patients in the contexts of medical negligence, damages assessment, family law and criminal law. It also considers the difficult issues of access and equity caused by the limited availability of the triple therapy in low- and middle-income countries.</p>","PeriodicalId":45522,"journal":{"name":"Journal of Law and Medicine","volume":"31 2","pages":"217-224"},"PeriodicalIF":0.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499264","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}