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Donor conception, direct-to-consumer genetic testing, choices, and procedural justice: an argument for reform of the Human Fertilisation and Embryology Act 1990. 捐献受孕、直接面向消费者的基因检测、选择和程序正义:改革《1990 年人类受精和胚胎学法案》的论据。
IF 1.8 4区 医学 Q1 LAW Pub Date : 2024-07-27 DOI: 10.1093/medlaw/fwae028
Caroline A B Redhead, Lucy Frith

In this article, using theories of procedural justice and 'slow violence', we consider potential reform of the Human Fertilisation and Embryology Act 1990. Our theoretical discussion is underpinned by findings from the ConnecteDNA project, exploring how people affected by donor conception experience direct-to-consumer genetic testing (DTCGT). The negative impacts of DTCGT, especially shock discoveries about the circumstances of someone's conception in adulthood, are linked to donor anonymity, and how its continued protection is experienced as a barrier to the rights and agency of donor-conceived people. We focus on two key issues relating to the donor information access process set out in section 31ZA of the 1990 Act. The first is that it excludes certain cohorts of donor-conceived people, creating inequalities of access to donor information. The second is the impact of the use of DTCGT to search for that information. We discuss what a procedurally just process of law reform would look like, concluding that, whatever (prospective) approach to donor anonymity is taken, the donor information access process should be the same for all donor-conceived people. We thus argue that, even were the status quo to be maintained, reform of the donor information access process with retrospective effect would be required.

在这篇文章中,我们运用程序正义和 "缓慢暴力 "理论,对《1990 年人类受精与胚胎学法案》的潜在改革进行了思考。我们的理论讨论以 ConnecteDNA 项目的研究结果为基础,该项目探讨了受捐献受孕影响的人如何体验直接面向消费者的基因检测(DTCGT)。DTCGT 的负面影响,尤其是对某人成年后受孕情况的惊人发现,与捐献者匿名性有关,也与持续保护捐献者匿名性如何被视为捐献受孕者权利和代理权的障碍有关。我们重点关注与 1990 年法案第 31ZA 条规定的捐献者信息获取程序有关的两个关键问题。第一个问题是它将某些捐赠受孕者排除在外,造成了获取捐赠者信息的不平等。其次是使用 DTCGT 搜索该信息的影响。我们讨论了程序上公正的法律改革过程应该是什么样的,得出的结论是,无论对捐献者匿名问题采取何种(预期的)方法,对所有捐献者受孕者来说,获取捐献者信息的过程应该是相同的。因此,我们认为,即使维持现状,也需要对捐赠者信息获取程序进行具有追溯效力的改革。
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引用次数: 0
Guy's and St Thomas'-v-Knight [2021] EWHC 25: Dignity in English law. Guy's and St Thomas'-v-Knight [2021] EWHC 25:英国法律中的尊严。
IF 1.8 4区 医学 Q1 LAW Pub Date : 2024-07-26 DOI: 10.1093/medlaw/fwae027
Melanie J Weismann
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引用次数: 0
Addressing the consequences of the corporatization of reproductive medicine. 应对生殖医学公司化的后果。
IF 1.8 4区 医学 Q1 LAW Pub Date : 2024-07-25 DOI: 10.1093/medlaw/fwae018
Sara A Attinger, Emily Jackson, Isabel Karpin, Ian Kerridge, Ainsley J Newson, Cameron Stewart, Lucy van de Wiel, Wendy Lipworth

In Australia and the UK, commercialization and corporatization of assisted reproductive technologies have created a marketplace of clinics, products, and services. While this has arguably increased choice for patients, 'choice', shaped by commercial imperatives may not mean better-quality care. At present, regulation of clinics (including clinic-corporations) and clinicians focuses on the doctor-patient dyad and the clinic-consumer dyad. Scant attention has been paid to the conflicts between the clinic-corporation's duty to its shareholders and investors, the medical profession's duty to the corporations within which they practice, and the obligations of both clinicians and corporations to patients and to health systems. Frameworks of regulation based in corporate governance and business ethics, such as stakeholder models and 'corporate social responsibility', have well-recognized limits and may not translate well into healthcare settings. This means that existing governance frameworks may not meet the needs of patients or health systems. We argue for the development of novel regulatory approaches that more explicitly characterize the obligations that both corporations and clinicians in corporate environments have to patients and to society, and that promote fulfilment of these obligations. We consider mechanisms for application in the multi-jurisdictional setting of Australia, and the single jurisdictional settings of the UK.

在澳大利亚和英国,辅助生殖技术的商业化和公司化创造了一个诊所、产品和服务的市场。虽然这可以说增加了患者的选择,但由商业需要决定的 "选择 "可能并不意味着更高质量的医疗服务。目前,对诊所(包括诊所公司)和临床医生的监管主要集中在医生与患者的关系以及诊所与消费者的关系上。诊所-公司对其股东和投资者的责任、医疗专业人员对其执业的公司的责任以及临床医生和公司对患者和医疗系统的义务之间的冲突却很少得到关注。基于公司治理和商业道德的监管框架,如利益相关者模式和 "企业社会责任",具有公认的局限性,可能无法很好地转化为医疗环境。这意味着现有的管理框架可能无法满足患者或医疗系统的需求。我们主张开发新的监管方法,更明确地描述企业和临床医生在企业环境中对患者和社会应尽的义务,并促进这些义务的履行。我们考虑了在澳大利亚的多司法管辖区环境和英国的单一司法管辖区环境中的应用机制。
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引用次数: 0
Towards a rights-based approach for disabled women's access to abortion. 以权利为本,促进残疾妇女获得堕胎服务。
IF 1.8 4区 医学 Q1 LAW Pub Date : 2024-07-17 DOI: 10.1093/medlaw/fwae026
Magdalena Furgalska, Fiona de Londras

This article adds to the still limited scholarship on the impact of abortion laws and policies on people with disabilities and those with diminished capacity who seek abortion. We argue that neither the legal nor policy framework currently operating in England and Wales adequately incorporates and protects the rights of people with disabilities or those experiencing mental ill-health. Rather, the law and policy framework jeopardizes their reproductive agency. We argue that greater attention to and incorporation of standards contained within the UN Convention on the Rights of Persons with Disabilities (including the sources produced by its Committee) and implementation of guidelines produced by the World Health Organization would result in a rights-affirming framework that supports disabled women's reproductive agency, enhances their effective enjoyment of human rights, and supports them in accessing quality abortion care.

关于堕胎法律和政策对寻求堕胎的残疾人和行为能力减弱者的影响,本文对仍然有限的学术研究进行了补充。我们认为,目前在英格兰和威尔士实施的法律和政策框架都没有充分纳入和保护残疾人或精神疾病患者的权利。相反,法律和政策框架损害了他们的生育权。我们认为,更多地关注并纳入联合国《残疾人权利公约》(包括其委员会编制的资料来源)中所载的标准,并执行世界卫生组织编制的准则,将产生一个支持残疾妇女生殖机构的权利确认框架,增强她们有效享有人权的能力,并支持她们获得高质量的堕胎护理。
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引用次数: 0
Fiona Kelly, Deborah Dempsey and Adrienne Byrt (eds), Donor-Linked Family in the Digital Age: Relatedness and Regulation Fiona Kelly, Deborah Dempsey and Adrienne Byrt (eds), Donor-Linked Family in the Digital Age:相关性与监管
IF 1.8 4区 医学 Q1 LAW Pub Date : 2024-07-15 DOI: 10.1093/medlaw/fwae025
A. Martani
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引用次数: 0
How should we decide how to treat the child: harm versus best interests in cases of disagreement. 我们应该如何决定如何对待孩子:在意见不一致的情况下,伤害与最佳利益的比较。
IF 1.7 4区 医学 Q2 Medicine Pub Date : 2024-05-28 DOI: 10.1093/medlaw/fwad040
David Archard, Emma Cave, Joe Brierley

Where parents seek treatment for their young child that healthcare professionals cannot agree to, the High Court can determine what is in the child's best interests. Some activists and academics seek change to impose threshold criteria that would bolster the decision-making rights of parents and reduce deference to clinicians and the courts. We defend the best interests standard against arguments that a higher threshold of 'significant harm' should apply. We do so from ethical, legal, and clinical perspectives. The matter is of significant moral and practical importance, especially in light of the divergence of academic opinion, the burgeoning number of cases coming before the courts and recent case law and statutory attempts to effect change. We begin by disputing ethical claims that a significant harm threshold is preferable to the best interests standard, and then we set out jurisprudential and practical arguments that demonstrate the imprudence of a significant harm threshold and defend the established yardstick of best interests.

如果父母为其年幼子女寻求治疗,而医疗保健专业人员无法同意,高等法院可以裁定什么符合儿童的最大利益。一些活动家和学者寻求改变,施加门槛标准,以加强父母的决策权,减少对临床医生和法院的依赖。我们捍卫最佳利益标准,反对应适用 "重大伤害 "这一更高门槛的观点。我们从伦理、法律和临床的角度为其辩护。这个问题具有重要的道德和现实意义,尤其是考虑到学术界的意见分歧、法院受理的案件数量激增以及最近的判例法和法律试图做出改变。我们首先从伦理角度对重大伤害门槛优于最佳利益标准的说法提出质疑,然后从法理学和实践角度提出论据,证明重大伤害门槛的不成熟,并为既定的最佳利益标准进行辩护。
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引用次数: 0
Heritable human genome editing: correction, selection and treatment. 可遗传的人类基因组编辑:矫正、选择和治疗。
IF 1.7 4区 医学 Q2 Medicine Pub Date : 2024-05-28 DOI: 10.1093/medlaw/fwae003
Rosamund Scott

Heritable human genome editing (HHGE) to correct a nuclear gene sequence that would result in a serious genetic condition in a future child is presented as 'treatment' in various ethics and policy materials, and as morally preferable to the 'selection' practice of preimplantation genetic testing (PGT), which is subject to the disability critique. However, whether HHGE is 'treatment' for a future child, or another form of 'selection', or whether HHGE instead 'treats' prospective parents, are now central questions in the debate regarding its possible legalisation. This article argues that the idea of 'treatment' for a future child is largely a proxy for 'seriousness of purpose', intended to distinguish HHGE to avoid serious genetic conditions from less obviously justifiable uses; that HHGE is best understood, and morally justified, as a form of 'treatment' for prospective parents who strongly desire an unaffected genetically related child and who have no, or poor, options to achieve this; that HHGE would be morally permissible if consistent with that child's welfare; that legalisation is supportable with reference to the right to respect for private and family life under Article 8 of the European Convention on Human Rights; and that HHGE is morally distinguishable from PGT.

通过可遗传的人类基因组编辑(HHGE)来纠正会导致未来孩子出现严重遗传病的核基因序列,在各种伦理和政策材料中被称为 "治疗",在道义上比植入前基因检测(PGT)的 "选择 "做法更可取,后者受到残疾问题的批评。然而,HHGE 是对未来孩子的 "治疗",还是另一种形式的 "选择",或者 HHGE 是对未来父母的 "治疗",这些都是目前有关 HHGE 是否可能合法化的争论中的核心问题。本文认为,为未来孩子 "治疗 "的概念在很大程度上是 "目的的严肃性 "的代名词,其目的是将为避免严重遗传病而进行的人类基因遗传学研究与不那么明显合理的用途区分开来;人类基因遗传学研究被最好地理解为一种 "治疗 "形式,在道德上也是合理的,这种 "治疗 "是针对那些强烈希望自己的孩子不受遗传影响,但又没有或没有很好的选择来实现这一目标的未来父母;如果符合该儿童的福祉,则在道义上允许进行 HHGE;根据《欧洲人权公约》第 8 条尊重私人和家庭生活的权利,HHGE 的合法化是可以支持的;HHGE 在道义上有别于 PGT。
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引用次数: 0
Case Comment-JJ v Spectrum Community Health: When Medical Paternalism Meets Prisoners' Dignity. 案例评论-JJ 诉 Spectrum Community Health:当医疗家长制遭遇囚犯尊严。
IF 1.7 4区 医学 Q2 Medicine Pub Date : 2024-05-28 DOI: 10.1093/medlaw/fwae005
Angelika R Reichstein
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引用次数: 0
Accommodations of private and family life and non-traditional families: the limits of deference in cases of cross-border surrogacy before the European Court of Human Rights. 私人和家庭生活与非传统家庭的协调:在欧洲人权法院审理的跨国界代孕案件中尊重的限度。
IF 1.7 4区 医学 Q2 Medicine Pub Date : 2024-05-28 DOI: 10.1093/medlaw/fwad038
Lydia Bracken

The European Court of Human Rights (ECtHR) case law on cross-border surrogacy establishes that a 'general and absolute impossibility' of obtaining recognition of the relationship, legally established in another country, between a surrogate-born child and their intended parents will violate the child's right to respect for private life. This approach requires States to accommodate familial bonds created through cross-border surrogacy and limits the margin of appreciation available to States to determine their national response. In recent case law, the ECtHR has adopted an interventionist approach in respect of national decision-making and has gone further than might be expected under the principle of subsidiarity. Examination of the emerging body of jurisprudence on cross-border surrogacy, however, reveals a preference for 'traditional' family formations, with the ECtHR tending to adopt a less interventionist and more deferential approach to national decision-making where the family at the centre of the case deviates from the structure of the family reflected in the seminal cross-border surrogacy case of Mennesson v France App no 65192/11 (ECtHR, 26 June 2014). This approach leads to inconsistency in the cross-border surrogacy case law as it creates something of a moving target for the vindication of children's rights in 'less traditional' family forms.

欧洲人权法院(ECtHR)关于跨境代孕的判例法规定,代孕出生的孩子与其预期父母在另一个国家合法建立的关系“一般且绝对不可能”获得承认,这将侵犯孩子尊重私生活的权利。这种做法要求各国适应通过跨国界代孕建立的家庭纽带,并限制各国决定其国家对策的升值幅度。在最近的判例法中,欧洲人权法院在国家决策方面采取了一种干预主义的做法,并且比根据辅助原则可能预期的走得更远。然而,对新兴的跨境代孕法律体系的考察显示出对“传统”家庭构成的偏好,欧洲人权法院倾向于在国家决策中采用较少干预和更顺从的方法,在这种情况下,处于案件中心的家庭偏离了Mennesson诉法国的开创性跨境代孕案件中所反映的家庭结构(欧洲人权法院,2014年6月26日)。这种做法导致了跨境代孕判例法的不一致,因为它为在“不那么传统”的家庭形式中维护儿童权利创造了一个移动的目标。
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引用次数: 0
Indi Gregory: A Wider Perspective on Children's Best Interests at the End-of-life. 英迪-格雷戈里从更广阔的视角看待临终儿童的最大利益。
IF 1.8 4区 医学 Q1 LAW Pub Date : 2024-05-28 DOI: 10.1093/medlaw/fwae006
Kevin De Sabbata, Abigail Pearson
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引用次数: 0
期刊
Medical Law Review
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