Monash Bioethics Review最新文献_第8页

Fetal information as shared information: using NIPT to test for adult-onset conditions. 胎儿信息作为共享信息:使用NIPT测试成人发病条件。

IF 1.6

Monash Bioethics Review Pub Date : 2021-12-01 Epub Date: 2021-12-31 DOI: 10.1007/s40592-021-00142-4

Hilary Bowman-Smart, Michelle Taylor-Sands

{"title":"Fetal information as shared information: using NIPT to test for adult-onset conditions.","authors":"Hilary Bowman-Smart, Michelle Taylor-Sands","doi":"10.1007/s40592-021-00142-4","DOIUrl":"https://doi.org/10.1007/s40592-021-00142-4","url":null,"abstract":"The possibilities of non-invasive prenatal testing (NIPT) are expanding, and the use of NIPT for adult-onset conditions may become widely available in the near future. If parents use NIPT to test for these conditions, and the pregnancy is continued, they will have information about the child's genetic predisposition from birth. In this paper, we argue that prospective parents should be able to access NIPT for an adult-onset condition, even when they have no intention to terminate the pregnancy. We begin by outlining the arguments against testing in such a situation, which generally apply the same considerations that apply in the predictive testing of a minor to the fetus in utero. We then contend, firstly, that there are important practical considerations that support availability of testing for prospective parents regardless of their stated intentions. Secondly, we object to the ethical equation of a fetus in utero with a minor. We base our analysis on a view of pregnancy that conceptualises the fetus as a part of the gestational parent, as opposed to the more common 'container' model of pregnancy. We suggest that fetal information is best conceptualised as shared information between the gestational parent and future child. Thus, it should be approached in similar ways as other kinds of shared information (such as genetic information with implications for family members), where a person has a claim over their own information, but should be encouraged to consider the interests of other relevant parties.","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2021-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39864437","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}

引用次数: 4

Contemporary challenges in children's health: law, ethics and policy. 儿童健康方面的当代挑战:法律、道德和政策。

IF 1.6

Monash Bioethics Review Pub Date : 2021-12-01 DOI: 10.1007/s40592-021-00149-x

Christopher Gyngell, Michelle Taylor-Sands

引用次数: 0

Children as voices and images for medicinal cannabis law reform. 儿童作为药用大麻法律改革的声音和形象。

IF 1.6

Monash Bioethics Review Pub Date : 2021-12-01 Epub Date: 2021-10-31 DOI: 10.1007/s40592-021-00139-z

Ian Freckelton Ao Qc

{"title":"Children as voices and images for medicinal cannabis law reform.","authors":"Ian Freckelton Ao Qc","doi":"10.1007/s40592-021-00139-z","DOIUrl":"10.1007/s40592-021-00139-z","url":null,"abstract":"This article situates the movement for the legalisation of medicinal cannabis within the bigger picture of the impetus toward recreational cannabis legalisation. It describes the role played by children with epileptic syndromes in the medicinal cannabis law reform campaigns in the United Kingdom, and Queensland, New South Wales and Victoria in Australia. Noting the 'rule of rescue' and the prominence in media campaigns of children in Australian and English cases of parental disputation with clinicians about treatment for their children, it reviews whether paediatric epilepsy is a suitable test case for the legalisation of medicinal cannabis. Taking into account the vested commercial interests of Big Cannabis, the current medico-scientific knowledge of the efficacy of medicinal cannabis in controlling paediatric epileptic seizures, and issues of dignity, health privacy, and the enduring digital footprints of media coverage, the article commences discussion about the ethics of the media, parents, politicians and entrepreneurial doctors utilising parents' testimonials about the effects of medicinal cannabis as part of the cannabis law reform movement.","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2021-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8557259/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39577530","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Good enough? Parental decisions to use DIY looping technology to manage type 1 diabetes in children. 足够好?父母决定使用DIY循环技术来管理儿童1型糖尿病。

IF 1.6

Monash Bioethics Review Pub Date : 2021-12-01 Epub Date: 2021-08-16 DOI: 10.1007/s40592-021-00133-5

Carolyn Johnston

{"title":"Good enough? Parental decisions to use DIY looping technology to manage type 1 diabetes in children.","authors":"Carolyn Johnston","doi":"10.1007/s40592-021-00133-5","DOIUrl":"https://doi.org/10.1007/s40592-021-00133-5","url":null,"abstract":"People are using innovative internet of things technologies to gain individualised management of their type 1 diabetes. The #WeAreNotWaiting movement supports them to build their own hybrid closed loop systems and access their real time blood sugar data via any web connected device. A small number of parents in Australia use such DIY looping systems to manage their child's type 1 diabetes, but these systems have not been approved by the Therapeutic Goods Administration in Australia, creating ethical dilemmas for clinicians about how to respond to the use of medical devices that are not registered on the Australian Register of Therapeutic Goods. This article considers whether the use of DIY looping is in the best interests of the child and, if not, whether intervention in parental decision making is justified to prevent harm to the child. It addresses the ongoing duty of healthcare professionals to provide care to children who are 'looping.' Reference is made to findings from a study, Personalised Closed Loop Systems for Childhood Diabetes, to illustrate stakeholders' perceptions of benefits and harms of DIY looping systems. I conclude that the decision of parents to use DIY looping technology could be considered to be in a child's best interests, broadly defined, and falls within the Zone of Parental Discretion, however healthcare practitioners who support parents may have professional concerns in doing so.","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2021-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1007/s40592-021-00133-5","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39318792","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}

引用次数: 1

A step too far or a step in the wrong direction? A critique of the 2014 Amendment to the Belgian Euthanasia Act. 是走得太远了还是走错了方向?对2014年比利时安乐死法案修正案的批评。

IF 1.6

Monash Bioethics Review Pub Date : 2021-12-01 Epub Date: 2021-12-31 DOI: 10.1007/s40592-021-00147-z

Joanna Murdoch

{"title":"A step too far or a step in the wrong direction? A critique of the 2014 Amendment to the Belgian Euthanasia Act.","authors":"Joanna Murdoch","doi":"10.1007/s40592-021-00147-z","DOIUrl":"https://doi.org/10.1007/s40592-021-00147-z","url":null,"abstract":"In 2014, Article 3 of the the Belgian Euthanasia Act (2002) (the Euthanasia Act) was amended ('the Amendment') to include the 'capacity for discernment' requirement. This paper explores the implications of this highly controversial Amendment. I remain unconvinced of the benefits for children < 12 years old suffering chronic or terminal illnesses. In Part One, I argue that the phrase 'capacity for discernment' is problematic and vulnerable to abuse; neither a consistent, widely accepted definition of the phrase has been established nor a standardised method or procedure to adequately gauge a minor's capacity for discernment. In Part Two I advance the argument that specifically for children < 12 years, aggressive and sophisticated paediatric palliative care treatment, which risks, but does not intend death, is more ethically justified than Euthanasia treatment. A definition of a child's interests is best achieved through a care-based ethics framework; namely, the child's relationship with their parents and family members, their doctors and medical practitioners is held to be an interest of crucial importance for the child. I conclude that paediatric palliative care arguably better promotes and upholds this interest.","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2021-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39864438","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}

引用次数: 0

Re Imogen: the role of the Family Court of Australia in disputes over gender dysphoria treatment. Re Imogen:澳大利亚家庭法院在性别焦虑治疗纠纷中的作用。

IF 1.6

Monash Bioethics Review Pub Date : 2021-12-01 Epub Date: 2021-09-19 DOI: 10.1007/s40592-021-00138-0

Georgina Dimopoulos, Michelle Taylor-Sands

{"title":"Re Imogen: the role of the Family Court of Australia in disputes over gender dysphoria treatment.","authors":"Georgina Dimopoulos, Michelle Taylor-Sands","doi":"10.1007/s40592-021-00138-0","DOIUrl":"https://doi.org/10.1007/s40592-021-00138-0","url":null,"abstract":"This article examines Re Imogen (No 6) (2020) 61 Fam LR 344, a decision of the Family Court of Australia, which held that an application to the Family Court is mandatory if a parent or a medical practitioner of a child or adolescent diagnosed with gender dysphoria disputes the diagnosis, the capacity to consent, or the proposed treatment. First, we explain the regulatory framework for the medical treatment of gender dysphoria in children and adolescents, including the development of the welfare jurisdiction under Section 67ZC of the Family Law Act 1975 (Cth). We then provide an overview of the Re Imogen decision, and discuss the balancing exercise involved in determining a child's best interests in the medical treatment context. We challenge the Family Court's conclusion that, in relation to a dispute about diagnosis or treatment, a finding that the child or adolescent is Gillick competent to consent to treatment is not determinative, and the Family Court must determine the dispute. We argue that this conclusion represents an unjustified incursion into the right of Gillick competent transgender children and adolescents to make decisions about their own bodies and identities, and that the protective role of parents and the Family Court cannot justify interfering with their bodily autonomy in this context. Finally, we propose an alternative regulatory framework that removes the Family Court from the medical treatment process for gender dysphoria in circumstances of dispute between a parent and their Gillick competent child.","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2021-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39429726","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}

引用次数: 2

Medical interventions for children born with variations in their sex characteristics: what's the rights approach? 对出生时性别特征有差异的儿童的医疗干预:什么是正确的方法?

IF 1.6

Monash Bioethics Review Pub Date : 2021-12-01 Epub Date: 2021-10-12 DOI: 10.1007/s40592-021-00137-1

John Tobin

引用次数: 3

The practitioner as endangered citizen: a genealogy. 作为濒危公民的从业者：谱系学。

IF 1.6

Monash Bioethics Review Pub Date : 2021-10-01 Epub Date: 2021-12-15 DOI: 10.1007/s40592-021-00143-3

Tom Koch

引用次数: 0

Marks, Nicola J., Mackie, Vera., Ferber, Sarah. IVF and Assisted Reproduction: A Global History. Singapore: Springer Singapore, 2020, pp. 361. Marks, Nicola J.， Mackie, Vera。费伯，莎拉。试管婴儿和辅助生殖:全球历史。新加坡:Springer Singapore, 2020, pp. 361。

IF 1.6

Monash Bioethics Review Pub Date : 2021-10-01 Epub Date: 2021-09-17 DOI: 10.1007/s40592-021-00134-4

Andrea Boggio

引用次数: 0

Annette Leibing and Silke Schicktanz (eds): Preventing dementia?: Critical perspectives on a new paradigm of preparing for old age : Berghahn Books, New York / Oxford, 2020. Annette Leibing 和 Silke Schicktanz（编著）：预防痴呆症？为老年生活做准备的新模式的批判性视角》：Berghahn Books，纽约/牛津，2020 年。

IF 1.6

Monash Bioethics Review Pub Date : 2021-10-01 Epub Date: 2021-09-08 DOI: 10.1007/s40592-021-00135-3

Niklas Petersen, Julia Perry

{"title":"Annette Leibing and Silke Schicktanz (eds): Preventing dementia?: Critical perspectives on a new paradigm of preparing for old age : Berghahn Books, New York / Oxford, 2020.","authors":"Niklas Petersen, Julia Perry","doi":"10.1007/s40592-021-00135-3","DOIUrl":"10.1007/s40592-021-00135-3","url":null,"abstract":"Given the lack of effective curative treatment options and in light of a significant reconceptualization of Alzheimer's disease, the focus of dementia research has shifted towards prevention, risk prediction, and detection in very early disease stages. In the context of these shifts, the edited volume Preventing Dementia?: Critical Perspectives on a New Paradigm of Preparing for Old Age (edited by Annette Leibing and Silke Schicktanz) collects critical and insightful positions on the new paradigm of dementia prevention from an interdisciplinary and international perspective. The editors introduce the overarching topic of prevention by reflecting on the optimistic framing of modifiable risk factors and their novelty in the dementia context. Leibing and Schicktanz call for a cautious reception of the findings in the Lancet report(s) and draw attention to epistemic, ethical, and socio-political issues of what the editors term the contested \"new dementia\" and to the effect that this might have on rethinking individual and societal perceptions of aging. The contributions of the anthology depict the social and cultural dimensions of dementia discourses and consider the ethical implications of the changing conceptions of Alzheimer's disease as well as the shift towards early disease stages and prevention. With this, the anthology initiates a debate about the often implicit unresolved social, ethical, and political implications and preconditions of the medical understanding and handling of cognitive disorders.","PeriodicalId":43628,"journal":{"name":"Monash Bioethics Review","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8688382/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39395216","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0