Monash Bioethics Review最新文献

Although rapid genomic sequencing (RGS) is improving care for critically ill children with rare disease, it also raises important ethical questions that need to be explored as its use becomes more widespread. Two such questions relate to the degree of consent that should be required for RGS to proceed and whether it might ever be appropriate to override parents' decisions not to allow RGS to be performed in their critically ill child. To explore these questions, we first examine the legal frameworks on securing consent for genomic sequencing and how they apply to the specific context of RGS for critically ill children. We then use a tool from clinical ethics, the Zone of Parental Discretion, to explore two case studies and identify under which circumstances it might be appropriate for parental refusal of RGS to be overridden. We argue that RGS may be a context where, in addition to assessing the complexity of the test offered, it is ethically appropriate to consider an effect on patient outcomes when deciding the degree of consent required. We also suggest that there are some contexts where it may be ethically justified to perform RGS, even when it is actively against the wishes of the parents. More work is needed to examine exactly how 'time-sensitive' exceptions to current guidance on consent for genomic sequencing could be formulated and operationalised for RGS for critically ill-children.

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.

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.

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.

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.

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.

There have been growing calls within Australia and beyond to defer medical interventions for children born with variations in their sex characteristics. These calls are increasingly grounded in the claim that such interventions when performed on infants and young children are a violation of their human rights. This paper examines the basis for this claim. It also examines the differences between the principles-based approach to medical ethics which has tended to dominant decisions regarding the treatment of children born with variations in their sex characteristics, relative to the adoption of a rights-based approach. It identifies the points of complementarity between these two discourses but suggests that a rights-based approach offers some unique and differing insights into several issues concerning children born with variations in their sex characteristics.

Medical practice has always involved at least three roles, three complimentary identities. Practitioners have been at once clinicians dedicated to a patient's care, members of a professional organization promoting medicine, and informed citizens engaged in public debates on health issues. Beginning in the 1970s, a series of social and technological changes affected, and in many cases restricted, the practitioner's ability to function equally in these three identities. While others have discussed the changing realities of medical practice in recent decades, none have commented on their effect on their effect on rights of practitioners as citizens. Here several cases begin an analysis of the manner in which those changes have limited the physician's right to act conscientiously and speak publicly in the face of organizational agendas and political priorities.