AI in Healthcare: Who’s responsible?

A/Prof. Bernadette Richards1

1University Of Adelaidde, Adelaide, Australia

We live in a world where new is better and there is a perception that this brave new world of technological advancement is a better place where disease will be banished and human error overcome. Whilst technological advancement has the potential to improve healthcare, achieve longer life and reduce the impact of human error, it brings with it a new set of legal and ethical concerns that warrant careful consideration.  This paper will consider the increasing role of artificial intelligence in the diagnosis and treatment of patients.  The core themes to be addressed include the following:

  • Who is responsible when things go wrong?
  • Is the addition of AI to treatment teams ethically appropriate?
  • What happens when we take ‘humanity’ out of the diagnosis and treatment equation?
  • How can this interaction be appropriately regulated?

Biography:

Bernadette Richards is an active researcher in the areas of Tort Law, Medical Law, and Bioethics.  She has written a text book on Tort Law (Tort Law Principles,) contributed to a collaborative text, Health Law in Australia and co-authored, Medical Law and Ethics: A Problem Based Approach.  Bernadette is Chair of a major clinical research ethics committee, Associate Editor (Law) of the Journal of Bioethical Inquiry President of Australasian Association of Bioethics and Health Law (AABHL). Current research projects include  advance care planning and vulnerable populations, access to innovative treatment, clinical interventions for intersex minors and regulation of innovative procedures.

Involuntary patients’ autonomy and the principle of open justice at mental health tribunal hearings?

Dr Andrew Caple1

1Queensland University of Technology, Bardon, Australia

Attempting to publish information about involuntary mental health tribunal cases (whether civil or forensic), advances several ethical and legal issues, such as the public interest in the open administration of justice; the equivocal right to privacy; and involuntary patients’ interests in effective treatment and recovery. This presentation canvasses the competing policy and legal issues relevant to balancing the principle of open justice with the interests of all stakeholders in cases where the media or involuntary patients seek publicity about a mental health tribunal case. There is currently very little transparency of such review hearings in Australia, and therefore these hearings are the subject of limited public and professional oversight. Australia’s statutory frameworks have mostly prevented the media and others from reporting a widely recognised societal problems; those being the efficacy of mental health treatments, and the lawfulness of serious review decisions. Transparency provides a mechanism to understand how relevant individuals and institutions with acknowledged human rights responsibilities discharge those responsibilities in the mental health context. Transparency facilitates the identification of those elements of mental health systems, which may be working effectively, and those which may not. This presentation questions whether Australia’s statutory and administrative approaches are consistent with current human rights obligations regarding open justice and privacy issues. Ultimately, the presentation contends that Australian legislatures should implement genuine supported decision-making frameworks to enable involuntary patients, should they wish, to make autonomous decisions to waive rights to privacy and confidentiality, and to open review hearings either in part, or in full. In addition, the presentation contends that reviewing tribunals should be obliged to publish reasons statements according to a model of good practice (for the most part), currently in operation in the jurisdiction of New South Wales.


Biography:

Andrew Caple is a sessional academic in the Faculty of Law at the Queensland University of Technology. After graduating as a medallist at Griffith University’s Law School, he worked as a Judge’s Associate in the District Court of Queensland, a Solicitor in the community legal sector, and a Lecturer at the University of Queensland, before completing his PhD at the Australian Centre for Health Law Research at QUT in relation to the operation of the open justice principle at Australian civil commitment review hearings.

Collapsing the indefensible border between law and clinical evidence: A new constitutive model of medical education and decision-making

Prof. Malcolm Parker1, Prof. Lindy Willmott2, Prof. Ben White2, Prof. Gail Williams3, Prof. Colleen Cartwright4

1University Of Queensland, Red Hill, Australia, 2Australian Centre for Health Law Research, Law School, Queensland University of Technology, Brisbane, , , 3School of Population Health, University of Queensland, Brisbane, Australia, , , 4Southern Cross University, Lismore, Australia, ,

As part of a large empirical project examining doctors’ decisions on withdrawing/ withholding treatment from patients who lack decision-making capacity, we confirmed that clinicians sometimes think and act in ways that they consider ethically and professionally appropriate, but which conflict with the increasingly important official role of law in decisions to withhold or withdraw treatment in Western jurisdictions. As well as demonstrating statistically significant gaps in legal knowledge on the part of clinicians, the research showed that a number of doctors regard law as being of limited utility in supporting good medical practice, at times contributing to poor clinical decisions; that a proportion of clinicians think that the law should be downgraded or ignored if the pursuit of the primary goal of patient welfare (as clinicians perceive it) requires it; and that following the law should be seen by doctors as discretionary or even as unnecessary for clinical decision-making. These attitudes reflect what we term the applied model of ethics and law in medical education and clinical practice. The applied model derives from the strong distinction between facts and values that has characterised the relationship between science and human values throughout the twentieth century and into the twenty-first.

We argue that the entanglement of facts and values, exemplified so clearly in medical practice, requires that the insistence on scientific fact as medicine’s primary normative authority be disrupted. Law should no longer be applied to an accepted core of science-based medical education and practice, but help constitute that core. Relevant law should be taught and implemented as part of medical knowledge and practice, normalizing legal knowledge as part of the clinician’s evidence base.


Biography:

Malcolm Parker is Emeritus Professor of Medical Ethics (UQ), Adjunct Professor, Australian Centre for Health Law Research (QUT), and inaugural and immediate past president and life member of AABHL. He was a committee member of the Medical Board of Queensland and the Medical Board of Australia, a director of the Postgraduate Medical Council of Queensland, and Chair of UQ’s Human Experimentation Ethical Review Committee. He worked in general medical practice for over thirty years, and has postgraduate qualifications in philosophy and health law.

He has published internationally in philosophy of medicine, bioethics, medical ethics, health law, and medical education.

Exploring the implications of collapsing boundaries in health law and ethics

Dr Lisa Eckstein1, Professor Dianne Nicol1, Associate Professor Mark Taylor2, Dr Jessica Bell2

1University of Tasmania, Hobart, Australia, 2Melbourne Law School, University of Melbourne, Carlton, Australia

New technological developments, alongside changing social and funding conditions, are blurring boundaries that have long served to determine responsibilities of persons and entities. This workshop aims to explore the ongoing pertinence of traditionally binary distinctions between, for example, research and clinical practice, private and public, and identified and de-identified. The workshop will provide an opportunity for a facilitated conversation among participants about the potential destabilisation of these demarcations, and what this might mean for future regulatory regimes. Discussion will be triggered by the below scenario: a hopefully realistic portrayal of collapsing boundaries in health law and ethics.

A rare disease program is being run out of a public hospital with funding sourced from a major drug company. A 14-year old patient is admitted to the program after a long-running odyssey to diagnose her progressive muscle wasting. To assist diagnosis, whole-genome sequencing (WGS) is performed on the patient and her biological parents. The program identifies a rare mutation in the patient leading to a diagnosis that previously has only been recorded in fourteen known cases. Based on one available case study, the treating team administer the patient with a drug currently approved for marketing for certain forms of cancer. The patient shows early signs of improvement and her ‘miracle cure’ gains widespread media attention. As a part of the standard protocol for the program, the three WGSs are uploaded to an online database, stripped of identifiers other than country of origin, clinical diagnosis, and self-identified racial/ethnic ancestry. An external research team accesses the sequences and finds a cancer predisposition. They question whether the finding should be returned.


Biographies:

This workshop will be presented by Dr Lisa Eckstein, Professor Dianne Nicol, A/Professor Mark Taylor, and Dr Jessica Bell. The presenters are members of the Centre for Law and Genetics and Helex@Melbourne respectively, where their research focuses on the ethical and legal implications of genetic and other emergent technologies, from multi-disciplinary perspectives. The idea for this workshop stems from a joint meeting of the CLG and Helex@Melbourne, and the presenting authors gratefully acknowledge the contributions of all in attendance.

Authors: Dr Lisa Eckstein, Professor Dianne Nicol, A/Prof Mark Taylor, Dr Jessica Bell, Professor Don Chalmers, Professor Margaret Otlowski, Professor Jane Kaye, Dr Harriet Teare, Dr Megan Prictor, Dr Rebekah McWhirter, Dr Jane Nielson

Intersex: Contested bodies, contested identities

Morgan Carpenter1

1Sydney Health Ethics + IHRA + GATE, Newtown, Australia

Once described as hermaphrodites and later as intersex people, individuals born with intersex variations are routinely subject to so-called “normalizing” medical interventions, often in childhood. Opposition to such practices has been met by attempts to discredit critics and reasserted clinical authority over the bodies of women and men with “disorders of sex development.” Claims of clinical consensus have been selectively constructed and applied and lack evidence. Limited transparency and lack of access to justice have helped to perpetuate forced interventions. At the same time, associated with the diffusion of distinct concepts of sex and gender, intersex has been constructed as a third legal sex. This has been accompanied by pious hopes and unwarranted expectations of consequences. The existence of intersex has also been instrumentalized for the benefit of other, intersecting, populations. The creation of gender categories associated with intersex bodies has created profound risks: a paradoxically narrowed and normative gender binary, maintenance of medical authority over the bodies of “disordered” females and males, and claims that transgressions of social roles ascribed to a third gender are deceptive. Contested claims are made both that medicalization saves intersex people from “othering”, and that legal othering saves intersex people from medicalization. In practice, intersex bodies remain “normalized” or eliminated by medicine, while society and the law “others” intersex identities. That is, medicine constructs intersex bodies as either female or male, while law and society construct intersex identities as neither female nor male. In response, an emerging human rights consensus demands an end to social prejudice, stigma, and forced medical interventions, focusing on the right to bodily integrity and principles of self-determination.


Biography:

Morgan is co-executive director of Intersex Human Rights Australia and a PhD candidate at Sydney Health Ethics, University of Sydney. Morgan has played an active role in systemic advocacy on federal anti-discrimination legislation and a Senate inquiry into forced sterilisation. He has participated in the first UN expert meeting on ending human rights violations against intersex persons, is a signatory of the “Yogyakarta Principles plus 10”, and member of an AHRC expert group on protecting the rights of people born with variations of sex characteristics in the context of medical interventions.

Victoria’s voluntary assisted dying laws: A regulatory analysis

Eliana Close, Prof. Ben White, Lindy Willmott

On 29 November 2017, the Victorian Parliament passed the Voluntary Assisted Dying Act 2017 (Vic). The Act, which will permit assistance to die in limited circumstances, will not commence until 19 June 2019. An Implementation Taskforce has been appointed to oversee the process of preparing for this law to come into force.

This paper presents an initial regulatory analysis of the new Victorian legislation. It draws on two standards identified by Yeung (2012, King’s Law Journal) for assessing a regime’s regulatory legitimacy. They are: whether the regime achieves its stated policy goals effectively and whether its design and implementation comply with the principles of good governance. Achieving goals effectively includes having regard to the cost of implementing the regime, while good governance includes considerations such as transparency, accountability, due process and substantive fairness.

The regime performs well in relation to some aspects of these criteria but less well on others. For example, the very detailed set of safeguards set out in the legislation ensures close monitoring of the assisted dying process promoting the values of transparency and accountability. However, those same safeguards could have the effect of hindering access to assisted dying if they are so burdensome that the people who are eligible in principle to access assisted dying cannot do so in practice. Further, the value of substantive fairness may not be reflected in some aspects of the eligibility criteria. An example is having different timeframes within which a person’s death is expected, depending on the nature of the person’s illness.

While the terms of the law may now be set (at least in the foreseeable future), there may be scope for the implementation process to have regard to these considerations and perhaps ameliorate potential design issues to better advance the regulatory legitimacy of the regime. This analysis may also provide insights for other parliaments that may be considering assisted dying reform.


Biographies to come.

Not all physician assisted death policies are created equal: Assessing some practical and ethical implications of policy options for medical assistance in dying

Daryl Pullman1

1Faculty of Medicine, Memorial University, St. John’s, Canada

Canada introduced legislation to legalize medical assistance in dying (MAiD) in June of 2016. In the same month the state of California passed the “End-of-Life Option Act” that now permits physician assisted suicide in that state.

Although California and Canada have approximately the same size populations (California @ 38 million; Canada @36 million) the two jurisdictions have had vastly different experiences with rolling out their respective end-of-life legislations. In California, between June and December 2016, 258 individuals began the end-of-life option process, 191 individuals were prescribed aid-in-dying drugs, and 111 were subsequently reported by their physicians to have died after ingesting the drugs. For a variety of reasons Canada does not currently keep detailed statistics on how many individuals initiate the MAiD process, although the number of deaths resulting from MAiD is reported by each province. For a comparable period of time (January – June 2017) there were 1,179 deaths due to MAiD in Canada (effectively 10 times as many deaths as in California).

In this presentation I discuss some of the reasons for the dramatic differences between physician assisted suicide as it is offered in California, and MAiD as it is practiced in Canada. A significant part of the explanation hinges on the availability of the ‘oral protocol’ (i.e. the ingestion of a lethal prescription by the patient) as opposed to a lethal injection administered by a physician intravenously. California’s legislation permits only the oral protocol. In Canada, the province of Quebec permits only lethal injection. Other provinces in Canada permit either lethal injection or the oral protocol, although the vast majority of deaths occur via lethal injection.  We will consider some of the practical and ethical implications of either policy as it pertains to the matter of patient choice.


Biography to come.

Standard of care – can Bolam be resuscitated?

Dr Charles Douglas1

1University of Newcastle, Callaghan, Australia

The tort of negligence requires the complainant ‘to show that he has been injured by the breach of a duty owed to him in the circumstances by the defendant to take reasonable care to avoid such injury.’  But of course, a professional has special knowledge and skills, so in professional negligence the standard of ‘reasonable care’ is hard for the layperson to judge. By the time of the landmark judgment in Bolam v Friern Hospital Management Committee in 1957, it seems to have been uncontroversial that ‘in the case of a medical man, negligence means failure to act in accordance with the standards of reasonably competent medical men at the time’. That assertion seems to be common sense, and the law with regard to standard of care in medical negligence cases still relies largely on peer opinion.  But the original common law ‘Bolam Principle’ – where a doctor could not be found negligent if acting ‘in accordance with a practice accepted as proper by a responsible body of medical men’ – did not survive in Australia.  A modified version of the principle was incorporated into statutory reforms throughout Australia in 2002-2003, following the recommendations of the Ipp Report.  However, judges in the NSW Court of Appeal in Dobler v Halverson (2007) , McKenna v Hunter & New England Local Health District [2013] and most recently Sparks v Hobson; Gray v Hobson [2018] have shown widely disparate opinions about the interpretation of the modified (statutory) version of the Bolam rule in NSW, section 5O of the Civil Liability Act 2002.  In this presentation the legal controversies are discussed.  It is argued that the ‘wrong’ interpretation of 5O will allow courts to choose between plaintiff and dependent expert’s opinions, and decide medico-legal standards without adequate reference to the original science.


Biography:

Charles Douglas is senior lecturer in Clinical Ethics and Health Law at the University of Newcastle.  He has a PhD in end of life decision-making, is a practising cancer surgeon, and is currently studying for a Juris Doctor.

Challenging the core of legal doctrine: negotiating the ‘supported’ decision making paradigm

Dr Jeanne Snelling1

1University Of Otago, Dunedin, New Zealand

With few exceptions, a person’s right to make and act on a decision in jurisdictions such as New Zealand depends upon them possessing certain functional abilities, commonly referred to as mental capacity. However, an emerging human rights discourse rejects the orthodox approach in favour of a support-based paradigm that is premised upon two distinct but related concepts: “universal legal capacity” and “supported decision making”. On this account, every adult person retains the right to exercise legal agency regardless of mental status, although some individuals will require active and potentially significant support to do so.  Importantly, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in conjunction with the subsequent General Comment (GC) of the Committee on the Rights of Persons with Disabilities, has endorsed this alternative support-based model in international law.  While the support paradigm has much to offer a rights-based society, it also presents a radical challenge to established legal doctrine.  This presentation identifies two particularly challenging areas implicated by the support paradigm, and considers the extent to which existing health care law may be interpreted consistently with the emerging supported decision-making paradigm.


Biography:

Dr Jeanne Snelling is a Lecturer at the University of Otago, holding joint appointments with the Faculty of Law and the Bioethics Centre.  Jeanne’s research interests include medical law and the regulation of emerging biotechnology.

Justice in genomic medicine: Challenges for Australian law and policy

Prof. Belinda Bennett1, Amanda Brown, Elizabeth Dallaston, Fiona McDonald

1Queensland University Of Technology, Brisbane, Australia

Advances in genomic medicine promise new opportunities for diagnosis and treatment of many diseases. In realising the potential of genomic medicine it will be important for the benefits of these advances to reach all parts of the Australian community equally. For this to occur it is important to ensure that genomic research is inclusive and representative of the Australian community. Engagement with populations and communities who are traditionally under-represented in genomic research will be a key part of achieving inclusiveness. At the same time, it is essential that services for genomic medicine are accessible on an equitable basis. This involves addressing geographic, financial, cultural and other factors that may present barriers to access.  The paper uses two examples: (i) biobanking; and (ii) access to genomic medicine to illustrate the justice-related issues that arise in genomic medicine. This paper argues for the importance of a justice-focused analysis in the development of laws and policies for genomic medicine. The paper draws on work being undertaken as part of an analysis of ELSI issues in genomic medicine in Queensland, funded by the Queensland Genomics Health Alliance (QGHA).


Biography:

Belinda Bennett is Professor of Health Law and New Technologies in the School of Law at Queensland University of Technology (QUT). She leads the Governance and Regulation of Health Care program within the Australian Centre for Health Law Research at QUT.

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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