What are the responsibilities of AABHL in relation to Australia’s policy on asylum seeker detention?

A/Prof. Deborah Zion1, A/Prof. Paul Macneill2, A/Prof. Chris Jordens2, Prof. Angus Dawson2

1Victoria University, Melbourne, Australia, 2University of Sydney, Sydney, Australia

Seeking asylum is protected by internationally agreed legal conventions, to which Australia is a signatory. Those seeking asylum are often fleeing violence, conflict or other serious threats to well-being. In 1992 the Australian government introduced a system of mandatory detention for asylum seekers while their claims for refugee status are assessed. More recently, asylum seekers who arrive by boat have been singled out for especially harsh treatment, detained off-shore in two locations: Manus (Papua New Guinea) and Nauru. The conditions in these camps, which include high levels of self-harm, riots and preventable deaths due to inadequate medical treatment, aim explicitly to deter other potential Asylum Seekers from attempting to come to Australia. The treatment of detainees has been held to be a clear abuse of basic human rights by a number of national and international investigations.

AABHL is a regional bioethics organisation with a large Australian membership. To our knowledge AABHL has remained silent in response to this situation (despite this issue being raised by Macneill (2003) with a prior Australasian bioethics body). We will use the case of Australian asylum seeker policy to raise a series of questions about the responsibility of AABHL as an organisation.

In this workshop, through a guided discussion of all participants in the workshop, we will seek to:

  • Argue that AABHL as an organisation has a responsibility to do something on this issue
  • Explore what action might be appropriate
  • Explore possible counter-arguments to taking action (e.g. people have different views, individuals can act but an organisation should be neutral, given the injustices in the world where do we stop, AABHL does not just have Australian membership etc.) and suggest why they do not outweigh the proposed responsibility.

Biographies:

Deborah Zion is A/Prof. at Victoria University. She has focused much of her recent research on ethical and legal issues related to asylum seekers in Australia.

Paul Macneill is A/Prof. at Sydney Health Ethics. He wrote a paper published in 2003 in the journal ‘Bioethics’ calling for bioethics organisations to act in response to Australia’s asylum seeker policies.

Chris Jordens is A/Prof. at Sydney Health Ethics. His research has covered a broad spectrum of issues in bioethics but has always focused on philosophy, politics and language.

Angus is Professor of Bioethics and Director of Sydney Health Ethics. His main research interests are public health ethics, research ethics and global ethics.

Increased access to reproductive genetic testing – silver bullet or Pandora’s box?

Selina Metternick-jones1

1South Metropolitan Health Service , Perth , Australia

The integration of reproductive genetic testing into clinical care presents both opportunities and challenges to parents in regards to shaping the lives of their future children. Increased access to reproductive genetic tests has the potential to prevent harm in the form of severe genetic conditions, as well as provide significant cost savings for the government. This access will result in the relationship between parents and their future children becoming  more complex and questions being raised in regards to the responsibility that potential parents have to protect the interests of their future child.

In the 2018 federal budget the Commonwealth Government committed to providing  $500 million for the Australian Genomics Health Futures mission with the aim of providing thousands of couples with pre-conception carrier testing for serious, though rare, genetic conditions including spinal muscular atrophy, Fragile X and cystic fibrosis. Policy makers and regulators must consider the impact of this testing on other healthcare services sought by potential parents and the moral and legal constraints around what parental decisions are permissible.

In this presentation I will discuss the need to ensure equitable access to other reproductive genetic technologies that parents may wish to use following preconception testing, such as IVF and pre-implantation genetic diagnosis. In addition, I will discuss the ethical issues associated with the various decisions potential parents may make following the use of pre-conception carrier testing. This includes the permissibility of implanting embryos with known genetic abnormalities, making decisions based on mutations with unknown penetrance and whether current regulatory frameworks are sufficient to protect parents as well as the interests of future children.


Biography:

I am the Ethics Coordinator at the South Metropolitan Health Service. I provide education and mentoring services to researchers and have implemented hospital wide changes to improve the efficiency and performance of the ethics committee. I have completed my Masters in Bioethics focusing on parental responsibility in the use of preimplantation genetics diagnosis and have previously completed an Honors thesis on access to reproductive genetic testing in Australia. My areas of interest are the issues surrounding reproductive genetic technologies, access to genetic testing and genetics in research and am currently undertaking a Graduate Certificate in Applied Law.

The collapsing borders of the more-than-national health system of Timor-Leste

Karel Caals1

1Department of Geography, Faculty of Arts and Social Sciences, National University of Singapore, Singapore, Singapore

Globalisation debates in health often pit global health against national health systems. Some argue that (ill) health does not stop at borders: “viruses don’t have passports”; that the nation-state is passé, and that in the 21st century, issues in health can only be addressed globally. Others resist this discourse and put forward the notion that only strong national health systems can guarantee health in an equitable way. In contrast to these positions, I argue that this dichotomy is ultimately false. Additionally, such classic (anti-)globalisation debates lose sight of the local. In this paper, I propose an alternative conceptual framework named the more-than-national health system in which issues in health are considered concurrently on global, national and local levels.

This paper illustrates the application of the more-than-national health system approach by explaining how Timor-Leste has addressed its health workforce needs in a manner that challenges conventional understanding in health systems development. Since its independence, Timor-Leste has drawn on an assemblage of health workforce resources from seemingly opposing sources to meet its health workforce needs. The Cuban Medical Brigade has trained almost 1,000 doctors, while The Royal Australasian College of Surgeons is preparing some doctors for specialist training in Papua-New-Guinee and Fiji. Additionally, some East Timorese were invited to study medicine in China. Similarly, nurses and midwives are trained in Timor-Leste and Indonesia, while the Australian NGO St John of God assists the national hospital with additional on-the-job training. The more-than-national health system approach draws on qualitative research carried out in Timor-Leste to show how its health system has been re-assembled with resources that cut across the global, national and local, to meet its health workforce needs. It is further argued that this approach gives greater attention to health workforce deficiencies and could thereby better support ethical decision-making on public health policies.


Biography:

Karel CAALS worked as a research assistant at the NUS Centre for Biomedical Ethics, where he was involved in projects ranging from end-of-life care to access to medicines, and clinical trials in low-and-middle-income countries. This is where he developed an interest in the fields of Health Systems, Global Health and Medical Travel, and what inspired him to pursue his PhD in Human Geography at NUS. As a Health Geographer, he explores different forms of association between health systems, studying Timor-Leste and its relations with various health systems of countries such as Cuba, Australia and Indonesia, as these countries collaborate with the East Timorese health system on medical care and training.

Should all newborns have their genomes sequenced?

Dr John Lantos1

1Childeren’s Mercy Hospital, Kansas City, Mo, United States

In 2014, Francis Collins, head of the NIH, proposed sequencing every baby’s genome to “shape a lifetime of personalized strategies for disease prevention, detection and treatment.” Many scientists endorse this approach. To analyze the ethical implications of such proposals, the Ethics and Policy Working Group of the NIH-funded NSIGHT Consortium convened three meetings of bioethicists, social scientists, lawyers, clinicians and industry leaders. We reviewed emerging data on the accuracy, clinical utility, and cost of genomic testing, follow-up, and treatment in different patient populations in order to propose policy recommendations.  We came to different conclusions that Dr. Collins.

I will present a summary of our recommendations about genomic sequencing (GS) in four contexts:  1) Diagnostic testing for symptomatic children in NICUs; 2) Predictive testing  to guide future health decisions in healthy newborns; 3) For state-mandated population screening of newborns; and 4) direct-to-consumer genomics.  I will give reasons why we conclude that, as of today, only diagnostic testing for sick babies is ethically justifiable outside of a research context.  The primary reason for caution in other domains is because of our vast ignorance about the meaning of many genomic variants, even ones that have been classified as clearly pathogenic.  Using data from early studies of genomic sequencing for both clinical diagnosis and for public health screening, I will show the difficulties arise from lack of knowledge about the population prevalence of genomic variants, and about the penetrance, expressivity, epigenetic influences, and other factors. I will show that the results can be dangerous, leading to inappropriate treatment in some cases, and inappropriate withholding of life-support in others.   Finally, I will analyze the ways in which the availability of genomic testing for newborns might change our ideas about the responsibilities of both parents and doctors to use genomic information responsibly.


Biography:

John Lantos, MD, is Professor of Pediatrics at University of Missouri in Kansas City and the founding director of the Children’s Mercy Hospital Bioethics Center. There, he directs an innovative, on-line program that is training a new generation of scholars in pediatric bioethics.  He has served President the American Society of Bioethics and Humanities (ASBH) as well as of the American Society of Law, Medicine, and Ethics (ASLME).  He has published hundreds of peer-reviewed articles and many books. His monthly case reports in journal Pediatrics analyze a wide range of topics in pediatric bioethics, health policy, and research ethics.

Hype and genomics: arguing for precautionary implementation to uphold autonomy in preconception screening

A/Prof. Ainsley Newson1

1Sydney Health Ethics, University Of Sydney, University Of Sydney, Australia

In May 2018, the Australian government announced a significant investment in health genomics: $500m over 10 years for an Australian Genomics Health Mission. The first project within this funding will be a $20m national implementation of population preconception screening. This ambitious initiative aims to offer any couple planning a pregnancy access to carrier testing for a range of genetic conditions; with the aim of offering reproductive choices to couples shown to have a high chance of having a child with one of the selected conditions.

This kind of information will undoubtedly be alluring. However, appropriate implementation of this and similar programs should recognise that not all information may be useful or desired. There is concern about increasing offers of genetic information in reproductive decision-making, particularly whether expanded ranges of tests may induce people to use them. There are also worries that genomics risks being over-hyped, leading to ‘technology-led’ implementation within the health system.

This paper will present and argue in favour of ‘precautionary adoption’ of genomics in the context of pre-conception screening. The paper will discuss how, despite its somewhat unpopular position in bioethics literature, the concept of ‘precaution’ might be useful as this program is rolled out. We also require a re-thinking and optimisation of the critical application of concepts such as reproductive autonomy, including the place of information and critical reflection.

These concepts can help ensure that the line between over- and under- use of genetic tests during reproductive decision-making can be appropriately drawn; ensuring that these tests are offered when it is appropriate to do so, but also while protecting a rich conception of reproductive autonomy.


Biography:

Dr Ainsley Newson is Associate Professor of Bioethics and co-Deputy Director at Sydney Health Ethics, University of Sydney. Her research focuses on the ethics of genetics, genomics and reproductive technologies, specifically how new tests, technologies and interventions can be developed and implemented appropriately. Ainsley’s research is strongly oriented to practical ethical issues and she has forged many successful collaborations with clinical and research geneticists. She has published her research widely. She is also Co-Investigator and Ethics Lead within the Australian Genomics Health Alliance and an Investigator on several other Category 1 funded projects. Ainsley is also active in bioethics policy development, including as Co-Chair of the Education, Ethics and Social Issues Committee of the Human Genetics Society of Australasia.

Maternal consumption of alcohol and moral responsibility in pregnancy

A/Prof. Catherine Mills1

1Monash University, Wellington Road, Australia

Internationally, the consumption of alcohol during pregnancy is recognized as a significant public health concern, since alcohol is known to have teratogenic effects on the developing fetus. Indeed, prenatal alcohol exposure is now one of the leading causes of preventable birth anomalies and can have life-long negative consequences for the child of that pregnancy. There is a growing discussion of the ethics of the maternal consumption of alcohol, and of different strategies for preventing it. This paper contributes to this through a philosophical discussion of moral responsibility and blameworthiness in pregnancy. I challenge the argument made in recent discussions of maternal consumption of alcohol and fetal alcohol spectrum disorder that attempt to justify punitive legal interventions to prevent harm to a future child. I show that these rely on an overly individualized conception of gestational responsibility that fails to take account of the ways in which structural exclusions and social vulnerabilities contribute to harm to future persons. Consequently, the preventative interventions they propose can reinforce social exclusions and vulnerabilities. Instead, I draw on recent work on marginal responsibility and moral disorientation to sketch an approach that takes account of the embodied relationship entailed in pregnancy, as well as the ways in which social and subjective vulnerabilities may shape and produce moral failure. This gives rise to a new account of blameworthiness regarding the consumption of alcohol in pregnancy that allows for greater consideration of vulnerability in responsibility than is typical in bioethics.


Biography:

Associate Professor Catherine Mills is an ARC Future Fellow in the Monash Bioethics Centre at Monash University. Her disciplinary background is philosophy, and she uses feminist philosophy and bioethics to explore ethical issues that arise in human reproduction, especially relating to innovative reproductive technologies. In her current research, she is looking at the moral responsibilities of women in pregnancy, as well as examining the ethical, social and legal implications of inheritable genetic modification of humans. This includes the implications of technologies such as CRISPR-Cas9 and mitochondrial replacement therapy.

The ethics of using companion robots for older adults’ wellbeing

Simon Coghlan1

1Deakin University, School of Medicine, Geelong, ,

Companion robots are touted as a means of improving the health and wellbeing of older Australians. Increasingly, older adults live alone or in aged care. Many people wish to ‘age in place’ – in their homes and communities. Yet shrinking social networks leave many older adults lonely, isolated, and at risk of poorer health.

Can robots help? ‘Assistive’ robots enable older people to (e.g.) connect remotely with relatives, remember dates, find things, etc. In contrast, ‘companion’ robots are designed to (partially) substitute for animal or human company. Examples include PARO the baby seal and AIBO the dog. Companion robots ostensibly elicit responses like affection, delight, tactile pleasure, care, warmth, and attachment. Thus, they supposedly enrich older adults’ lives.

This presentation critically explores a range of arguments for and against companion robots for older people. Some studies (e.g. Moyle) apparently show that companion robots improve engagement and interaction for older adults, not least those with dementia. Companion robots may thus have health benefits for the aged. Some also argue that robots might provide relief to overworked human caregivers. Critics (e.g. Sparrow) respond that companion robots tend to deceive and/or demean older people and may also lead to reduced interaction with real people and animals.

In addition to critically engaging with these arguments, this presentation goes further by exploring the concept of ‘enrichment’. In what way, if any, could emerging companion robots enrich an older and socially isolated person’s life? Could robots enhance capabilities (to use Martha Nussbaum’s word), such as affiliation, play, and emotional engagement? Can companion robots provide ‘company’ at all? Finally, should we be wary of a ‘utopia/dystopia fallacy’ – the tendency to think that companion robots must be either flatly good or flatly bad for us? In these ways, this presentation will push beyond current debates about the ethics of companion robots for older adults.


Biography:

Simon Coghlan (PhD, BVSc) is a lecturer in Health Ethics and Professionalism at Deakin University, School of Medicine, Geelong. Previously he lectured in ethics, bioethics, and philosophy at Australian Catholic University in Melbourne. He has also worked as a veterinarian in private practice for many years. His current research interests include One Health, veterinary ethics, and the concept of dignity. He is collaborating with researchers from the University of Melbourne on a project, funded by the Networked Society Institute, on the ethics of using social robots with older people.

Some bioethical implications of Indigenous suicide: Reflections on suicide in northern Ontario

Dr Richard Matthews1

1Bond University, Mudgeeraba, Australia

Similar to other colonial states, suicide rates among Indigenous populations in Canada are disproportionately high. Government responses are inadequate, at best leaving the status quo in place and commonly making conditions worse. Ill-understood is the fact that the colonial state continues to be the primary distal cause of Indigenous. This has complex and poorly understood bioethical implications. This paper applies Friedrich Engels’ (1845) concept of social murder to Indigenous suicide. This makes law, including health law, a significant cause of Indigenous suffering and death. The moral challenge is complex. Health care workers, including bioethicists, are beneficiaries and enactors of the social systems that cause the suicides. Failure to recognize this has morally paradoxical and racist results. Apparently ethical choices – whether at the level of individual behavior, policy construction, or resource allocation – become racist.  Moreover, they contribute to and legitimate the suicide crises to the extent that the bioethicist or healthcare worker fails to understand and counter these forces. The presentation concludes by suggesting strategies for avoiding social murder supporting effective suicide reduction among Indigenous populations.


Biography:

Richard Matthews is a bioethicist and philosopher. He has taught and researched at multiple universities in Canada and Australia. In addition to his academic work, he has practical experience as a clinical and public health ethics consultant in north western Ontario, Canada. He has specific research interests in health ethics with Indigenous peoples and in understanding violence and conflict. Dr. Matthews is the author of a book on torture (The absolute violation: why torture must be prohibited. MQUP: Montreal & Kingston, 2007 along with articles in philosophy, social justice and medical ethics.

Overdiagnosis and risk: When is it justifiable to impose risk of harm in health care?

Prof. Wendy Rogers1, Professor Stacy Carter2, Professor Vikki  Entwistle3

1Macquarie University, Sydney, Australia, 2University of Wollongong, Wollongong, Australia, 3National University of Singapore, , Singapore

As several philosophers have noted, moral theories generally focus on when and why it is justifiable to cause actual harm, and struggle to explain when and why it is justifiable to impose risks of harm. Questions about the justifiability of risk imposition in healthcare have become more acute with increasing recognition that screening and other health interventions run the risk of harming people via overdiagnosis.

To date, attempts to resolve ethical concerns about overdiagnosis focus on asking people to make informed decisions and provide explicit consent before undergoing relevant interventions. However, this approach fails to tackle the prior question of whether, and if so under what circumstances, it is ethically justifiable for healthcare interventions to impose risks on people.

This paper draws on the work of Sven Ove Hansson to investigate the justifiability of risk imposition associated with several exemplar health care interventions associated with overdiagnosis. Hansson proposes a set of exemption conditions under which it may be acceptable to expose people to risk. Hansson’s conditions include that the exposure “is part of a persistently justice-seeking social practice of risk taking” and that everyone exposed has as much influence over their exposure as it is possible for all to have equally without losing the social benefits that justify the risk.

Hansson’s promising procedural approach generates interpretive challenges and some counterintuitive assessments when used to analyse the risk imposed by interventions associated with overdiagnosis across different healthcare systems.

We conclude with suggestions regarding how Hansson’s approach may need to be reformulated to make it more serviceable in assessing the ethics of imposing risk in healthcare.


Biography:

Wendy Rogers has spent four years engaged in research on overdiagnosis, funded by an ARC Future Fellowship. This work has focused on the relationship between overdiagnosis and the definition of disease, and ethical issues arising from overdiagnosis. Her other areas of research include the ethics of surgical innovation, conceptualising vulnerability in research and clinical ethics, and bioethics activism against forced organ harvesting in China.

Privacy and technologically enhanced communicable disease surveillance

Dr Jane Johnson1

1The University Of Sydney , University Of Sydney, Australia

In the literature on public health, ethical concerns have been raised about the threat to individual privacy posed by data collection. The conventional response to this concern has been to distinguish data collected as part of routine public health surveillance from data collected as part of public health research, with only the latter thought to require ethical oversight and the protection of individual interests via informed consent. This response is however problematic since it is difficult to draw the distinction in a principled way, and further, and potentially more seriously, it does no real ethical work. The distinction does not justify treating data collected as part of public health surveillance differently to data collected through research. In recognition of this situation, and in response to the emergence of new potentially more intrusive technologies, there are increasing moves to introduce ethical review processes to public health surveillance.

Responding in part to this situation, Alan Rubel has proposed an alternate approach which circumvents the issues around the surveillance-research distinction. He argues that privacy in public health represents a deep personal rather than a basic interest, and that a claim based on a deep personal interest can be trumped when the basic interests of others in a community are threatened. Whilst this approach is promising, we argue that it may be unsatisfactory in the context of new technologically enhanced communicable disease surveillance. This is due to both the nature of the technology and of emerging infectious disease events. Problems in applying what we call, drawing on Rubel, the ‘unreasonable exercise test’ involve the kind of prospective assessments it requires, which may be complicated by time pressures, uncertainty and fallibility. The result may be that it is only possible to determine after an event if any infringements of privacy were justified.


Biography:

Jane is a field philosopher who divides her time between the University of Sydney and Macquarie University. Her research investigates ethical questions in science and in medicine, specifically around emerging infectious diseases, animals in research, and surgical innovation.

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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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