Pre-implantation Genetic Diagnosis (PGD) and the prohibition on pro-disability selection: The need for public consultation in Australia

Dr Malcolm Smith1

1 Senior Lecturer, Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, GPO Box 2434, Brisbane, Qld, Australia 4001. E-mail: mk.smith@qut.edu.au

The National Health and Medical Research Council’s (NHMRC) Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research (2007) have recently undergone review. One aspect of the guidelines relates to the regulation of pre-implantation genetic diagnosis (PGD). Prior to the review, the Guidelines stated that ‘pending further community discussion’, the technology should not be used to select in favour of a ‘genetic defect or disability in the person to be born’. The draft Guidelines released ahead of the public consultation have moved away from an emphasis on ‘community discussion’, to the statement that PGD ‘may not be used to select in favour of a genetic defect in the person who would be born’, therefore implying that a process of consultation has settled the issue of ‘pro-disability selection’.

This particular issue was not a focus of the Assisted Reproductive Technology (ART) Working Committee’s review, nor has it been the subject of community discussion in Australia. In this paper, I outline how the regulatory position against selecting in favour of genetic defects is something that requires appropriate consideration, thus necessitating engagement with appropriate stakeholders in the community. In particular, I do this by drawing upon the reform process in the UK where changes were made to the law without adequate public consultation, thus sparking significant criticism against the prohibition on pro-disability selection.


Biography

Dr Malcolm Smith is a Senior Lecturer at the QUT Law School. He is co-leader of the Children’s Health and Beginning of Life research program in the Australian Centre for Health Law Research. Malcolm’s research focuses on the law relating to children and medical treatment and the legal and ethical issues associated with assisted reproductive technology (ART), particularly embryo selection technologies. Malcolm’s current research project examines the regulation of cross-gender hormone therapy for the treatment of childhood gender dysphoria. Malcolm has published extensively in the area of children’s health and ART.

Holding Big Food accountable for marketing unhealthy products to children: A new approach under international human rights law?

Belinda Reeve1

1 Sydney Law School, University of Sydney, F10 Eastern Avenue, Camperdown, NSW 2006, email: Belinda.reeve@sydney.edu.au

Multinational food companies are a key “vector” for non-communicable disease, thanks to their role in manufacturing, selling, and promoting unhealthy foods and beverages. But unlike tobacco, public health advocates face an uphill battle in securing government restrictions on the sale and marketing of unhealthy foods.  In an attempt to prompt government action, advocates have framed aspects of chronic disease prevention as a human rights issue, including the promotion of unhealthy foods and beverages to children. Their argument is that targeting children in unhealthy food marketing infringes upon rights contained in the UN Convention on the Rights of the Child, justifying state intervention to protect children from unhealthy food advertising.

Rather than focusing on state obligations under international human rights law, this paper looks at whether holding food companies responsible for human rights infringements could benefit population health. This approach is worth considering in light of the creation of an international framework that holds businesses directly accountable for their impact on human rights, centred on the Guiding Principles on Business and Human Rights. My paper explores the implications of these principles (and other related instruments) for business practices in relation to food marketing to children, and for states’ obligation to ensure that food companies respect human rights. The paper concludes by exploring the pitfalls of holding businesses directly responsible for their human rights performance, and explains why states should retain a central role in protecting health and human rights.


Biography

Belinda is a lecturer in health law at the Faculty of Law, University of Sydney. She has a particular interest in the role of law in chronic disease prevention, and has done research on topics such as food reformulation and regulation of food marketing to children.

The Voluntary Euthanasia Bill 2016 (SA) and undue influence – inadequate protection of a voluntary decision?

Michaela Okninski1

1University of Adelaide, Adelaide Law School

Voluntary euthanasia is a controversial issue that has divided South Australian Parliament for over two decades now. While the issues contained within the euthanasia debate are vast, they can largely be reduced to arguments pertaining to a right to exercise individual autonomy and concerns about adequate regulation. Because euthanasia is such a severe and definitive form of medical treatment, protecting a voluntary decision is obligatory.  Indeed, protecting voluntariness is crucial as it justifies euthanasia and gives it legitimacy. Thus to achieve this objective, the legislative response to this pertinent issue has been to mandate comprehensive safeguards. However, the proposed legislative response to assessment of undue influence that serve to safeguard a voluntary decision have not been adequately addressed and require proper consideration.

Thus this paper argues for proper consideration of undue influence provisions in proposed euthanasia legislation in South Australia. First, a brief discussion on past euthanasia Bills in this jurisdiction will be provided. This discussion will primarily focus on undue influence safeguards in the current Voluntary Euthanasia Bill 2016 (SA). Second, the complexity of the legal doctrine of undue influence will be addressed, highlighting the risks inadequate consideration of undue influence poses. This paper concludes proffering basic recommendations for proper inclusion of undue influence provisions in euthanasia legislation.

It is hoped that this paper will generate critical discussion on, and appreciation of, the complexity of the doctrine of undue influence. As the Voluntary Euthanasia Bill 2016 (SA) stands, it is doubtful whether undue influence provisions offer any meaningful protection. Until undue influence is given proper consideration, voluntariness is seriously undermined which disrupts the very foundation of voluntary euthanasia.


Biography

Michaela E. Okninski is a first year Master of Philosophy Candidate at the University of Adelaide and holds LLB/LP (Hons) qualifications from Flinders University (South Australia). Her research interests include voluntary euthanasia, physician-assisted suicide, undue influence in medical treatment and consent and refusal of medical treatment.

The evidence used by courts and tribunals to establish capacity: A study comparing three different types of capacity

Sam Boyle1

1 TC Beirne School of Law, University of Queensland, St Lucia, QLD 4072, s.boyle@law.uq.edu.au

In order to investigate how courts and tribunals determine capacity, a case study was done in Queensland. The study compared capacity decisions by courts and tribunals for three types of capacity: personal and/or financial capacity (decided in the guardianship/administration jurisdiction), testamentary capacity, and capacity to conduct legal proceedings. The study examined the types of evidence used in those decisions, how that evidence was used, and how this differed between the capacity types. The results showed two very clear patterns: firstly, adults in the guardianship/administration jurisdiction are far more likely to be found to lack capacity, and secondly, there is far greater use of medical evidence by the tribunal deciding personal/financial capacity than either of the two other types of capacity. This was manifested both in the rate of agreement between the tribunal and medical experts who provided evidence, and in the weight given to that evidence, especially in comparison to other available sources of evidence, such as that gathered from the adults themselves. These results are illuminating, and add to the empirical understanding of how capacity is determined in a legal setting. Also, the dramatic weight given to medical evidence in the guardianship/administration jurisdiction revealed in this study raises five possible concerns, which will be explored in some depth. These concerns include questions over whether the relative weight given to medical evidence in that jurisdiction matches the probative value of this evidence; it also includes concerns over the respective roles of doctor and patient, and the potential for patient disempowerment in the process of deciding capacity.


Biography

Sam is a researcher who is looking at the question of capacity, particularly in the case of mental illness. He is conducting a PhD on the question of how capacity should be determined in the case of Anorexia Nervosa. This involves consideration of the bioethical issues surrounding capacity assessment, and an empirical study of how capacity is determined in a legal setting. Sam also lectures in and has published in the areas environmental and property law.

Public and private mechanisms of accountability for health care justice: Australia’s asylum seeker and refugee offshore health care program

Paula O’Brien1

1 Melbourne Law School, The University of Melbourne, 185 Pelham Street, Carlton, VIC, 3053, obrienpl@unimelb.edu.au

The Australian Government retains foreign governments and private corporations to provide health care to asylum seekers in off-shore detention on Nauru and Manus Island. It also contracts to provide health care services to persons found to be refugees whom the Government refuses to settle in Australia and instead settles on Nauru and in Papua New Guinea. It is emerging that the health care needs of these vulnerable groups are being poorly served by the arrangements put in place by the Australian Government.

This paper analyses three accountability mechanisms which have been recently, or are presently being, used to scrutinize the Australian Government’s conduct in relation to the health care of asylum seekers and refugees: private litigation for harms suffered by individuals or groups of asylum seekers; freedom of information requests, in particular by the media; and an audit by the Australian National Audit Office into health care delivery in immigration detention.

In examining these three mechanisms, the paper asks the following questions: What do these different public and private accountability mechanisms offer in terms of health care justice for asylum seekers and refugees? What are the comparative strengths and weaknesses of these mechanisms? What other mechanisms might be usefully used to ensure that the Australian Government is meeting the health needs of asylum seekers and refugees in off-shore places in a fair manner? And in addressing these questions, the paper seeks to answer the urgent underlying question: what does health care justice look like for asylum seekers in off-shore detention and, very significantly, for those persons who have been found to be refugees but have sent to live permanently on Nauru and PNG, both being places with less than adequate health care systems by Australian standards?


Biography

Paula O’Brien is a Senior Lecturer at Melbourne Law School. She has a BA/ LLB from The University of Melbourne and an LLM from the University of Cambridge, specialising in international law. Paula’s research is focused on access to health care for marginalised groups, the legal regulation of dangerous commodities (in particular alcohol), and public interest lawyering.

Two decades of euthanasia law reform attempts in Australia: Are there any lessons to be learnt?

Professor Lindy Willmott,1 Professor Ben White,2 Christopher Stackpoole,3 Dr Kelly Purser,4 Dr Andrew McGee5

1Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, 2 George Street, Brisbane 4000, Queensland, Australia, l.willmott@qut.edu.au
2Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, 2 George Street, Brisbane 4000, Queensland, Australia, bp.white@qut.edu.au
3 Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, 2 George Street, Brisbane 4000, Queensland, Australia, christopher.stackpoole@protonmail.com

4 Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, 2 George Street, Brisbane 4000, Queensland, Australia, k.purser@qut.edu.au
5 Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, 2 George Street, Brisbane 4000, Queensland, Australia, a.mcgee@qut.edu.au

Law reform to allow euthanasia or physician-assisted suicide (or ‘assisted dying’ as it is commonly labelled now) is likely to occur in Australia at some point in the future. The authors suggest that pressure to reform the law comes from a range of factors: there is high and sustained public support for reform, an ageing and increasingly informed population seeking greater choice at the end of their lives, a changing legal landscape internationally and continued agitation for reform from the media (including social media).

Over the past two decades or so, there has also been a sustained attempt by individual politicians in most Australian states and territories to amend current laws that prohibit such acts. More than 50 bills have been tabled since the first voluntary euthanasia bill was introduced into the ACT Legislative Assembly by an independent member of parliament, Michael Moore, on 16 June 1993. Yet (at least at the time of writing this abstract), both euthanasia and physician-assisted suicide remain unlawful throughout Australia.

In this paper, the authors present the results of its review of legislative attempts in Australia over the past two decades. We examine who has been proposing reform, relevant political affiliations and the role, more broadly, that party politics has played. We have examined the nature of those attempts to better understand the various legislative models that have been proposed, and the differences between them. Through a close examination of parliamentary records, we also identify a handful of those Bills that have been ‘close to passing’ (including the Bill that was passed into law for a brief period in the Northern Territory), and examine whether any conclusions can be drawn from why these Bills, although unsuccessful (except for the Northern Territory Bill), garnered a greater degree of political support.


Biography

Lindy Willmott is a Professor with the Faculty of Law at the Queensland University of Technology and a Director of the Australian Centre for Health Law Research at QUT.  She researches in the area of health law, particularly end-of-life issues and is currently undertaking a number of empirical research projects funded by the ARC.  She is also a Chief Investigator in a NHMRC funded Centre of Research Excellence on End of Life.  Lindy is also the author of many text books and is one of the editors of the text ‘Health Law in Australia’.

Community knowledge of law at the end of life

Professor Ben White1, Professor Lindy Willmott2, Associate Professor Cheryl Tilse3, Professor Jill Wilson4, Dr Deborah Lawson5, Professor Jeffrey Dunn6, Ms Angela Pearce7, Professor Joanne Aitken8, Dr Rachel Feeney9

1 Australian Centre for Health Law Research, Queensland University of Technology, GPO Box 2434, Brisbane Qld 4001, bp.white@qut.edu.au
2 Australian Centre for Health Law Research, Queensland University of Technology, GPO Box 2434, Brisbane Qld 4001
3 School of Nursing, Midwifery and Social Work, The University of Queensland, Brisbane Qld 4072
4 School of Nursing, Midwifery and Social Work, The University of Queensland, Brisbane Qld 4072
5 Cancer Council of Victoria, 100 Drummond Street, Carlton Vic 3053 
6 Cancer Council Queensland, PO Box 201, Spring Hill Qld 4004
7 Cancer Council New South Wales, PO Box 572, Kings Cross NSW 1340
8 Cancer Council Queensland, PO Box 201, Spring Hill Qld 4004
9 Australian Centre for Health Law Research, Queensland University of Technology, GPO Box 2434, Brisbane Qld 4001

We report on research undertaken as part of a three year Australian Research Council-funded study examining community members’ understanding and use of law when participating in medical treatment decisions at the end of life. There has been little Australian research undertaken on general community knowledge of end-of-life law.  It is also unclear how knowledge of end-of-life law affects people’s involvement in making treatment decisions for themselves or their loved ones.  Part of this project involved a large scale survey (n  = 1175) of a representative sample of adults from Queensland, New South Wales and Victoria, conducted using computer assisted telephone interviewing.  The survey explored the extent to which adults know their legal duties, rights and powers as patients or substitute decision-makers, the sources from which people derive relevant legal knowledge (e.g., family, doctors, legal services, the internet), experiences of end-of-life decision-making and demographics.  Surveys were adapted for each State law.  Findings presented will include levels of community knowledge on end-of-life law, how people would seek information if needed, predictors of legal knowledge and details of decision-making experiences.


Biography

Professor Ben White is a Director of the Australian Centre for Health Law Research at the Queensland University of Technology (QUT). He has published extensively in the area of health law, with a particular focus on end of life decision-making and adult guardianship law. Ben graduated with first class Honours and a University Medal in Law from the Queensland University of Technology. He won a Rhodes Scholarship to complete a DPhil at Oxford University, where his doctoral thesis investigated the role that consultation plays in the law reform process. Before joining the Law School, he worked as an associate at the Supreme Court and at Legal Aid Queensland. Between 2005 and 2007, Ben was appointed as the full-time Commissioner of the Queensland Law Reform Commission where he had carriage of the Guardianship Review on behalf of the Commission. He also served as a part-time Commissioner between 2007 and 2010. He is presently undertaking a number of ARC and NHMRC funded studies examining law at the end of life.

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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