Parental rights, best interests and significant harms: Medical decision-making on behalf of children post – Great Ormond Street Hospital v Yates [2017]

Dr Imogen Goold1

1Associate Professor and Admissions Co-Ordinator, Faculty of Law, University of Oxford, Fellow and Tutor in Law, St Anne’s College

Who should have the ultimate say over a child’s medical treatment? Gard and Yates argued that in cases where there is a choice of treatments, parents should be the final arbiter of a child’s medical care unless their decision puts the child at risk of significant harm. Both the Court of Appeal and the Supreme Court rejected this argument, affirming their authority to intervene in any parental decisions where a child’s welfare is affected and reiterating that the decision must be taken in the child’s best interests. We argue that they (like many courts before them) wrongly elided the question of when the court should intervene with that of how an intervening court should make decisions, (namely in the child’s best interests). We argue that the courts need to offer more justification for the current low threshold for intervention and consider whether some medical decisions should be reserved to parents. We argue for a move to a harm threshold for judicial intervention.

What mechanisms are suitable to protect Australian Indigenous knowledge

Sara Potts1

1James Cook University, Townsville, QLD

Aboriginal and Torres Strait Islander Peoples (respectfully referred to hereafter as Indigenous Peoples) have a unique relationship with Country and have responsibilities to care for their particular Country and its heritage. The holistic, communal and inter-generational traditional knowledge of Indigenous Peoples is inadequately recognised and protected under Australian law. However, Indigenous communities have developed innovative mechanisms to affirm their rights over maintaining and protecting their cultural knowledge and heritage. Using locally developed protocols and policies in conjunction with legal agreements and contracts, has enabled Indigenous communities to protect and enforce how their knowledge and resources are used and accessed. Indigenous Peoples have internationally recognised rights to conserve, maintain and protect cultural knowledge and heritage, for present and future generations.


Biography:

Sara manages the operations of the Townsville Hospital and Health Service Human Research Ethics Committee and provides advice on ethical matters in relation to research and applying National and International ethics guidelines for conducting research. Sara has over 10 years’ experience in health and research sectors, and is also studying majors in Tropical Health and Society, and Indigenous Australian Studies at James Cook University.

Through a glass darkly – evolving a practice of supported decision-making in the absence of a legal framework

Dr John Hopkins1

1Psychological Medicine, Middlemore Hospital, Auckland, New Zealand, ,

Supported decision-making involves providing support to people whose decision-making ability is impaired, to enable them to make their own decisions wherever possible. Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) confers the right to enjoy legal capacity on an equal basis with others; and the twin obligations of governments to – ensure that those who need it to exercise their legal capacity receive access to support; and ensure safeguards are in place to prevent abuse when exercising their legal capacity. New Zealand was quick to sign the CRPD in 2007, then ratify it a year later and has actively supported its evolution. New Zealand’s guardianship legislation, The Protection of Personal Property and Rights Act (PPPR Act) 1987, was initially considered consistent with the CRPD, but over time concerns have emerged that revision of the New Zealand legislation is required to make it fully conform with Article 12 of the CRPD. The PPPR Act is underpinned by the principles of – presumption of capacity; maximising a person’s capacity; allowing the freedom to make unwise decisions; and making the least restrictive intervention. These principles implicitly assume there is a role for supported decision-making. However, the PPPR Act does not explicitly provide a framework for the development or application of supported decision-making – there is no definition included; no guidance or instruction on when to use it or how; and the only legal remedies stipulated are various forms of substituted decision-making. So in the absence of a clear legal framework, clinicians are left evolving their practice of the support and assessment of capacity by ethical first principles. This presentation describes the journey of one clinician whose work frequently encompasses capacity assessment, to “peer through the glass darkly” and develop an ethical practice of supported decision-making.


Biography:

John Hopkins is an adult and old age liaison psychiatrist at Middlemore Hospital in Auckland. His clinical experience over a 30 year career includes rehabilitation, administrative, disability, adult community and old age psychiatry. He is an unrepentant “baby boomer” with particular interests in delirium, capacity assessment and co-funding for complex co-morbid conditions.

Print me an organ? Regulatory and legal considerations of 3D printed medical products

Antonia Horst1

1Queensland University Of Technology, Kelvin Grove, Australia

3D printing in biomedical applications as well as Bioprinting are discussed throughout scientific literature to potentially solve unmet problems in healthcare and even to change healthcare as we know it. The computer driven layer-by-layer manufacturing process allows for unseen three-dimensional structures as well as personalised medical products, which can be perfectly matched to a particular patient’s anatomy. While the scientific progress has been rapidly developing over the last decade, legal and regulatory discussions as well as frameworks at all levels of governance are lacking far behind. International regulators, such as the Australian Therapeutic Goods Administration and the Food and Drug Administration involved stakeholders to assess the new possibilities this technology enables and evaluate, whether the current regulatory frameworks are equipped to govern them. While regulators already voiced concerns regarding 3D printed personalised medical device and pre-market regulation thereof, bioprinting has not yet been addressed by any international regulator. This talk aims to firstly address the status quo of 3D printing of personalised medical products at this point in time to build a realistic foundation for the subsequently presented legal, regulatory, and ethical challenges, which are expected to arise as personalised 3D printed products make their way into hospitals. Current medical products regulations are set out to govern mass-produced medical products. This begs the question, whether they are fit to regulate highly personalised 3D printed medical products. Regulators, such as the Australian Therapeutic Goods Administration and the US Food and Drug Administration involved stakeholders to assess the new possibilities this technology enables and evaluate, whether the current regulatory frameworks are equipped to govern them. Chances as well as barriers and loopholes in current regulatory frameworks will be presented in this talk using a comparative law lens, contrasting the regulatory and legislative approaches in the US, the EU and Australia.


Biography:

Antonia is a PhD candidate at the Centre for Regenerative Medicine, QUT, and the Intellectual Property and Innovations Law Group, QUT. She is working towards regulatory and legislative change with regards to 3D printed, personalised medical products. In particular, her research centres on how legal and regulatory frameworks enable, shape and potentially hinder innovation in medical 3D printing. Her project’s approach is highly transdisciplinary. She works alongside a team of researchers working on innovation in additive manufacturing. Their work, and her own, forms part of the ARC ITTC in Additive Biomanufacturing, of which she is a scholarship holder. This transdisciplinary approach ensures a deep reciprocal understanding of different disciplines which allows for effective, evidence-based regulation, policy and lawmaking. Antonia holds a law degree from Ludwig Maximilians University Munich in Germany.

Teaching bioethics and biotechnology through children’s cyberpunk: Children’s literature in the university ethics classroom

Evie Kendal1

1Deakin University, Geelong Waurn Ponds, Australia

Literature can have great educational impact, particularly with regards to helping readers empathise with people suffering disadvantages they are not themselves familiar with, through depicting relatable characters and sharing their intimate struggles against racism, sexism, or other systematic discrimination. With particular attention to the use of literature in bioethics, Valentina Adami (2012) claims literary representations help us see cases as “embedded in specific human contexts and to understand the powerful emotions and intricate interpersonal dynamics that lie behind a bioethical case.” She claims the “bioethics-in-literature” approach investigates bioethical issues through the lens of literary fiction, allowing for a “richly rendered and vividly presented” alternative to the dull, clinical case studies often used in discourse.

According to Alison Lurie (1990), children’s literature has always been littered with “lessons… disguised as stories,” in which children are taught “manners, or morals, or both.” The instructional value of these “morality tales” for children has often been the sole determinant in identifying suitable children’s literature over time. However, while classical and popular literature are often invoked in bioethics scholarship and teaching, children’s literature is largely ignored.

This paper considers the role children’s literature could play in university ethics classrooms using the example of Eoin Colfer’s children’s cyberpunk novel, The Supernaturalist (2004). This text includes discussions of unethical pharmaceutical testing, genetic engineering, human augmentation, artificial intelligence, and the loss of autonomy and identity accompanying an increasingly globalised and digitised world. The dominance of capitalist organisations and corporate surveillance also contributes to the cyberpunk aesthetic of the novel. Bioethical issues surrounding the advent of new biotechnologies are effectively explored from the perspective of disenfranchised children and misunderstood animals, providing a good example of how the bioethics-in-literature model can promote ethical discussion in education.


Biography:

Evie Kendal is a Lecturer in Bioethics and Health Humanities at the Deakin School of Medicine. Her recent research focuses on representations of emerging reproductive biotechnologies in science fiction and medical practitioners in popular television. Evie currently teaches into the Ethics, Law and Professionalism stream of the medical degree at Deakin University.

About the Association

The Australasian Association of Bioethics and Health Law (AABHL) was formed in 2009.

It encourages open discussion and debate on a range of bioethical issues, providing a place where people can ask difficult questions about ideas and practices associated with health and illness, biomedical research and human values.

The AABHL seeks to foster a distinctive Australasian voice in bioethics, and provide opportunities for international engagement through its membership, journal and conferences.

Members come from all the contributing humanities, social science and science disciplines that make up contemporary bioethics.

Many members have cross-disciplinary interests and all seek to broaden the dialogues in which all members of the wider community ultimately have an interest.

The AABHL is a supportive, creative and challenging community that provides a rich source of continuing academic refreshment and renewal.

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