Mental health care in the age of empowerment

Nicole Shepherd1

1University Of Queensland, Herston, Australia

In this talk I present an analysis of program designed to support people with serious mental illness to live in the community.  Policy documents and interviews with 95 staff involved in program delivery were analysed using a Foucauldian governmentality approach.  A discourse of choice, freedom and empowerment was reflected in the program design.  This discourse was shaped by the recovery movement, a health social movement that sought to increase the autonomy of service users. While promoting autonomy is important, the principle of solidarity could be more highly valued than it is currently. Embracing the principle of solidarity would provide the ethical justification for funding a wider range of services in the community that facilitate meaningful opportunities for participation.  We need to change the paradigm of mental health care and assert that living well is not just the ability to be free, but the ability to be engaged in enriching relationships with others as valued members of the moral community.


Biography:

Nicole Shepherd is a sociologist with an interest in mental health policy and critical social theory.  Her previous publications have explored the implications of the recovery approach for workers in mental health care.  She is a Lecturer in Ethics and Professional Practice at the Faculty of Medicine at the University of Queensland.

The “shazam” moment in empirical bioethics

Prof. Angus Dawson1

1Sydney Health Ethics, University Of Sydney, Australia

For the purposes of this talk I assume that in bioethics we wish to establish a substantive ethical conclusion about some issue in health or the life sciences. In the light of this I will explore how we can and should conceptualise the interface between the empirical and the normative in empirical bioethics. What, exactly, is the basis of this apparently magical “shazam” moment? First, I will explain why my question is not a version of the traditional is/ought (logical) objection deriving from Hume, and I will suggest how anyone working in empirical bioethics can sidestep that problem (if they are willing to accept the relevant commitments). Second, I will, instead, focus on what I term the question of methodological intention: a requirement for greater clarity about what role any empirical component plays in any bioethical project. This is important because there are various very different functions for the empirical and the normative. For example, a non-exhaustive list might include the following:

  • Hypothesis Testing: where a prior normative hypothesis is tested against the ‘real world’ through empirical work.
  • Explanation: where normative concepts or theories are used to explain some empirical findings.
  • Deliberation: where it is assumed that any empirical findings about the public’s views have determinative normative weight in policy choices.
  • Understanding: where empirical work allows greater insight into relevant complexity or context as a means of informing normative argument.
  • Coherence: where the empirical and normative are in ‘reflective equilibrium’.

I will explore the way that the ‘shazam’ moment is structuring in each case. My point is not to suggest that any of these approaches are at least prima facie problematic, just that they are very different tasks. Each one involves a prior set of substantive commitments and these should be articulated and defended.


Biography:

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

One Health, rabies prevention and more-than-human considerations in Indigenous communities in Northern Australia

Dr Chris Degeling1, A/Prof  Tess Lea3, Dr Victoria  Brookes4, Prof  Michael Ward4

1Research For Social Change, Faculty of Social Science, University of Wollongong, Australia, 2Sydney Health Ethics, University of Sydney , Australia , 3Faculty of Arts and Social Sciences, Dept. of Gender and Cultural Studies , University of Sydney , Australia , 4School of Veterinary Science, University of Sydney , Australia

The spread of rabies in eastern Indonesia poses a risk to northern Australia.  Dogs are numerous in East Arnhem Land (EAL) and the Northern Peninsular Area (NPA), usually unrestrained and living in close human-dog relationships. The response to any rabies outbreak on Australian territory will focus on dog vaccination, controlling dog movements and depopulation. A One Health approach to zoonotic diseases should seek to co-promote human and animal health, whilst also seeking to accommodate the preferences of affected communities. We report on 4 community panels/workshops and >40 semi-structured interviews conducted with: (i) EAL and NPA community members; (ii) Indigenous Rangers in EAL and NPA; and (iii) residents of Cairns, the local regional centre. We used storyboard methodologies to work with participants to explore the following questions:

  1. What do people who live in EAL, the NPA and Cairns think should and should not be done if a rabies incursion was to occur?
  2. How should the interests of individuals, communities, and nonhuman animals be accommodated in such a response?
  3. What are the roles and responsibilities of dog owners and other community members in the event of a rabies incursion?

Australia is currently rabies free; therefore, the results of this study can inform control strategies that are more in keeping with community values. We found that the capacity of community members in the NPA and EAL to contribute and/or adapt to a biosecurity response is likely to be limited by material disadvantage, dominant cultural norms and food security concerns. Responsible ownership means different things within and across the study settings; the cultural value placed on dogs/dingoes is variable and conditional. Adopting a ‘strengths-based’ approach mandates that the communities at greatest risk need to be helped to prepare for and develop strategies to manage a biosecurity response to a rabies incursion.


Biography:

Chris is a health social scientist, philosopher, and practicing veterinarian who works in the social studies and ethics of public health. At the completion of his PhD (2009) he undertook a further 18 months training in qualitative research methods and population health intervention cross-appointed to the O’Brien Institute of Public Health and Veterinary Faculty at the University of Calgary, Canada. He is currently a Senior Fellow at Research for Social Change at the University of Wollongong where he leads the NHMRC funded project: Can One Health strategies be more effectively implemented through prior identification of public values?

Authority in empirical bioethics

Prof. Stacy Carter1, Prof. Vikki Entwistle2, Prof.  Jackie Leach-Scully3

1Research for Social Change, University of Wollongong, The University Of Wollongong, Australia, 2Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, 3Policy Ethics and Life Sciences Research Centre, School of Geography, Politics and Sociology, Newcastle University, United Kingdom

A dominant problematic for empirical bioethics is the implied relationship between is and ought. At the heart of this problematic are questions about authority in research, which have been relatively neglected. In this paper, we report on work in progress investigating the forms of authority that are assumed or invoked in empirical bioethics projects. We will begin by contrasting several methodologies that are used for empirical bioethics. We then propose three forms of authority that may be assumed or invoked in research practices, and show that these forms of authority are assumed or invoked differently in different methodological traditions. We conclude by connecting our argument about authority to the is-ought tension, and considering how our thinking regarding authority might be reflected in research and reporting practices.


Biography:

Stacy Carter is Professor and Founding Director of Research for Social Change, a unit for values-based social science research in the Faculty of Social Science at the University of Wollongong.

Vikki Entwistle is Professor and Director of the Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore.

Jackie Leach-Scully is Professor and Executive Director of the Centre for Policy, Ethics and the Life Sciences in the School of Geography, Politics and Sociology at Newcastle University in the UK.

The ethics of market withdrawal of and disinvestment from medicines

Jessica Pace1, A/Prof Wendy Lipworth1

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

The option to withdraw marketing approval or subsidy for medicines underpins a number of healthcare policies governing access to medicines. For example, a number of jurisdictions have introduced mechanisms that allow for the conditional approval and funding of medicines, whereby a medicine is granted marketing approval or subsidy on the condition that further data is collected to confirm its safety, effectiveness or cost-effectiveness once it has entered the market. This data is then used to decide if the medicine should remain on the market, if it should continue to be subsidised and, if so, whether a price adjustment is needed. There is also hope that the increased availability of biomedical real world and big data will allow for faster identification of low-value technologies, providing guidance on technologies to be targeted for withdrawal of regulatory approval or subsidy in order to make best use of scarce healthcare resources and deliver more effective, cost-effective and affordable care for both individual patients and society as a whole.

However, regulatory withdrawal and disinvestment of medicines also raises a range of important ethical and philosophical issues. These include questions related to clinical ethics (such as what responsibilities do physicians have to protect patients who have had a positive effect from medicines that are subject to disinvestment and withdrawal), epistemology (what is considered to be sufficient evidence of harm- either to individual patients or the broader community- that would justify a disinvestment or regulatory withdrawal initiative), distributive justice (how do we ensure that the benefits and burdens of any regulatory withdrawal and/or disinvestment initiative are distributed fairly) and procedural justice (what are considered to be “fair” processes for determining when market withdrawal and disinvestment are to take place). To date there has been minimal attention paid to these issues in either the empirical or theoretical ethics literature or policies in this area and these issues have not been subject to rigorous ethical analysis.

In this workshop, we aim to develop a more nuanced bioethical perspective of the ethics of market withdrawal of and disinvestment from medicines. We will begin with a series of short presentations outlining our research (both empirical and theoretical) in this area (40 minutes). We will then involve the audience in a series of group discussions utilising real and hypothetical disinvestment scenarios to examine the following questions:

  • How might a bioethicist conceptualise the risks and benefits of disinvestment and communicate this to varied stakeholder groups (including patients and their families, physicians, members of the pharmaceutical industry and policy makers)? (25 minutes)
  • What safeguards could we implement to minimise the risks of market withdrawal and disinvestment? Which (if any) of these should we implement? Is it feasible to do this or are other approaches needed? (25 minutes)

Biographies:

Jessica Pace is a PhD candidate at Sydney Health Ethics (SHE) at the University of Sydney, with undergraduate degrees in biochemistry, law, and pharmacy.  She is pursuing research that examines stakeholder values and beliefs surrounding accelerated access to medicines, including initiatives that bypass or circumvent existing political processes in order to provide faster and/or broader access to new therapies.

Wendy Lipworth is a bioethicist and health social scientist at Sydney Health Ethics (SHE) at the University of Sydney. Her research, which is supported by an NHMRC Career Development Fellowship, focuses on the ethic and politics of health technology innovation.

Working with communities: Engaging the public about the ethics of and decision to pursue personal genomic testing

Dr Jacqueline  Savard1,2,3, Ms Chriselle  Hickerton4,5, Professor Brenda Wilson6, Professor Sylvia Metcalfe4,5, Ms Bronwyn Terrill3,7,8, Associate Professor Clara Gaff9, Associate Professor Kathleen  Gray5, Dr Anna  Middleton10, Associate Professor Ainsley Newson2

1Deakin University, Geelong , Australia, 2The University of Sydney, Sydney, Australia, 3Garvan Institute of Medical Research, Sydney, Australia, 4Murdoch Children’s Research Institute , Melbourne , Australia , 5The University of Melbourne, Melbourne, Australia , 6The University of Ottawa, Ottawa, Canada, 7The University of New South Wales, Sydney , Australia , 8Genome.One , Sydney , Australia , 9Melbourne Genomics Health Alliance , Melbourne, Australia , 10Society and Ethics Research, Connecting Science, Welcome Genome Campus, Cambridge, United Kingdom

Personal genomic testing (PGT) for multiple purposes is marketed to ostensibly healthy people.  Interest in these tests has significantly expanded in recent years.  In turn, access to tests and the reported results to consumers are blurring boundaries between medical, ‘wellness’ and ‘recreational’ genomic testing.

As part of our Genioz project, in 2017 we conducted nine public deliberative workshops Australia-wide, involving 129 participants with (n=23) and without (n=106) experience of testing. We aimed to explore non-expert perspectives on PGT. Drawing on earlier survey and interview data, we selected three categories of testing for exploration: ancestry (n=61), wellness (n=34), and children’s health and aptitudes (n=34).

Four stepwise, neutrally-framed information sets pertaining to key scientific and ethical issues in PGT, were presented with time for facilitated discussion over a 2.5hr period. Data were captured using a mixed methods approach. We report the results of: tracker questions from 5 time points in the workshops (including baseline); participant attitudes regarding information consumers should know about PGT; and a thematic analysis of discussions and written responses by participants.

Tracker question data during the workshops indicate that participants became less comfortable with, and more thoughtful about, pursuing testing. Discussions and written responses reflected this change, with participants identifying ethically complex issues (about consent, family communication and privacy) that aligned with information they rated as important to know when considering PGT.

This relatively brief deliberative methodology highlights a useful public engagement strategy focusing on the ethics of new technologies. This research and its findings demonstrate that bioethics need not be left behind in conversations around emerging issues in health care and research. Instead it can inform discussions across different stakeholder groups, contribute to policy and aid the development of relevant resources for other non-expert users, so they can critically reflect on their choices around new genomic technologies.


Biography:

Dr. Jacqueline Savard is a lecturer in health ethics and professionalism at Deakin University. Her research interests include the ethics of new genomic technologies, how genetic information is used in daily life and how these evolving ideas can be communicated and engaged with the public.

Challenges with the introduction of genomic sequencing in medicine: genetic health professionals’ perspectives

Dr Danya Vears1

1 Centre For Biomedical Ethics And Law, KU Leuven, Leuven, Belgium

Next generation sequencing technologies (NGS) such as whole genome, whole exome, and large panels of genes, are rapidly changing the paradigm of medicine. Although initially NGS was used primarily for gene identification in rare disease, it is now used more widely in other areas of clinical care and, in some cases, can be requested by non-genetics specialists (e.g. cardiologists, oncologists, neurologists). Widespread use of NGS carries with it many ethical and practical challenges. One ethical challenge receiving much of the attention from ethicists relates to incidental findings (IF) – changes in the patient’s DNA that are extraneous to the original rationale for testing. However, whether this is as challenging in practice requires exploration.

Semi-structured interviews were conducted with 35 genetic health professionals (GHPs) in Europe, Australia, and Canada to ask about their experiences with requesting and returning results from NGS-based tests to patients. As part of these interviews, GHPs were asked which aspects they feel are most challenging about reporting of findings from NGS to patients/parents. Their responses to this question have been explored using inductive content analysis, where categories are identified from the data.

Some GHPs discussed challenges relating to IF, such as where a mutation has been identified that either uncovers a previously unknown risk of developing a late onset condition, or that identifies a worse prognosis for the patient than was suggested by their existing symptoms. However, GHPs raised other challenges which have previously received less attention, such as difficulties counselling patients when the results of the tests are negative or uncertain, educating non-genetics specialists, and managing patient expectations.

These findings highlight the importance of consulting with relevant stakeholders to identify which hypothetical ethical issues are actually problematic in practice. This has implications for training GHPs, as well as for development of feasible return of results policies.


Biography:

Dr Danya Vears is a postdoctoral research fellow of the Research Foundation, Flanders in Belgium. Her current work  uses qualitative and quantitative methodologies to explore ethical aspects relating to the use of new genomic sequencing technologies in clinical care. Prior to this, she completed her Master of Genetic Counselling, and her PhD exploring parents’ and genetic health professional perspectives’ on carrier testing in children at the University of Melbourne, Australia. She is also a member of a number of national and international committees, such as the Education, Ethics & Social Issues Committee of the Human Genetics Society of Australasia.

Complex factors affecting hospital doctors’ roles in and responsibilities for infection prevention

Prof. Lyn Gilbert1, Professor Ian Kerridge1

1Sydney Health Ethics, School of Public Health, University of Sydney, Australia

Published literature indicates that doctors are consistently less compliant than nurses with infection prevention and control (IPC) practices, such as hand hygiene. This is significant because preventable, potentially serious, healthcare associated infections (HAIs) still occur with significant frequency and rates correlate broadly with IPC practices.  Differences in adherence, between nurses and doctors, is a source of inter-professional tension and doctors’ status means that their behaviours disproportionately influence those of other staff.

In a qualitative study of senior doctors, nurses and administrators in a Sydney tertiary hospital we found that factors, which potentially contribute to doctors’ relatively poor IPC practices, are complex. They include the fact that most doctors have an inherent aversion to “rules”, especially those imposed by others (nurses, managers); some regard IPC policies as unnecessary or discretionary; IPC policies are sometimes inflexible and/or inappropriately applied; and failure to observe them is rarely associated with (immediate) clinical or punitive consequences. Moreover, some doctors regard serious HAIs as  rare and unavoidable and/or are unaware of the incidence, or implications for patients, of less serious, but more common, HAIs. Competing priorities may interfere with consultants’ public hospital commitments, which are poorly defined in employment contracts and unenforceable; without positive role models, busy/overworked junior doctors, may regard IPC practices as time-consuming and of low priority.

Our results suggest that moral exhortations, that doctors ‘must’ wash their hands, are likely to be ineffective. New clinical, organisational and socio-political strategies are needed to increase doctors awareness and responsiveness to IPC. The most basic of these would be: to reveal the true burden of HAIs, by targeted surveillance; to ensure that IPC policies are implemented according to clinical context, in consultation with all stakeholders, including doctors; and that organisational expectations of all staff, including senior consultants, were clearly defined in employment contracts and enforced.


Biography:

Lyn Gilbert is an infectious diseases physician, with clinical and research interests in communicable disease epidemiology, surveillance and control, emerging infectious diseases and antimicrobial resistance, including their ethical implications. She is currently doing research on the ethics and politics of hospital infection prevention and control (IPC) and innovative methods of improving IPC practice.

Disorders of Sex Development: What guidance do doctors give to parents to tell their child about their intersex condition

Muhammad Zubayr Ali Maudarbocus1, Professor Lynn  Gillam2, Associate Professor Clare Delany2

1The University Of Melbourne, Parkville, Australia, 2The Royal Children’s Hospital, Parkville, Australia

Disorders of sex development (DSD) are congenital conditions associated with atypical development of chromosomal, gonadal or anatomical sex. Historically, medical and surgical treatment assigned a child to a gender as early as possible and little information was given to children.  As an individual’s sex and gender are increasingly acknowledged as existing on a continuum, treatment has had a more holistic focus on the overall well-being of the child within the context of their cultural and social environment. However, treatment remains controversial and some argue that gender assignment surgery diminishes a child’s future autonomy to decide for themselves. Little is known, from an empirical perspective, about how clinicians communicate information to parents and to children about DSD conditions; whether they mention alternative views about surgery or distinguish between parents’ and children’s’ interests, and whether they leave the parents to decide or are more directive in their advice.

In this paper we report the results of a qualitative study where (n = 10) clinicians from different backgrounds were interviewed using a semi-structured exploratory approach, about the guidance they give to parents about telling their child about their DSD.  Although we found that clinicians consider it important to facilitate how and when parents should talk to their child, there was considerable variation about what type of information to give; when it should be given; and for what purpose. Some clinicians suggested parents should take their cues from questions posed by the child and others believed it important to actively build a child’s positive identity by normalising the condition from an early age. We discuss these different views by analysing how they relate to what is ethically important for the child and family.


Biography:

I am a final year medical student with a background in anatomy. I have worked extensively with the queer community through my work with the Coming Out Support Group. I also have done advocacy work with MDQueer to advocate for the inclusion of queer health in the medical curriculum. I have a strong interest in Human Rights and its intersection with Ethics, especially when applied with the treatment of children born with an intersex variation.

Practices and standards in empirical (bio)ethics research: An open discussion

Prof. Stacy Carter1, Prof  Vikki Entwistle2, Dr Bek McWhirter3, Assistant Professor Tamra Lysaght2

1Research for Social Change, Faculty of Social Science, The University Of Wollongong, Australia, 2Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, 3Centre for Law and Genetics, Faculty of Law & Menzies Institute for Medical Research, University of Tasmania, Australia

If you do empirical ethics research, please come along to this workshop to talk about your own practices, and about how we might develop shared methodological understanding in empirical bioethics. We will assume that empirical ethics is worth doing: our focus will not be whether empirical bioethics should be done, but how it should be done.

Recently, European groups have attempted to develop standards for empirical ethics research. We will use that work as a jumping-off point, but will spend most of our time discussing three sets of questions in small groups and together:

  1. Why do you do empirical ethics research? What do you think the goals of such research should be? What kinds of research questions do you think should be asked in this work?
  2. How helpful is it to attempt to develop standards for empirical ethics research? How might practices in empirical ethics research relate to existing standards for empirical and theoretical research from other disciplines?
  3. How do you think about and work between the empirical and normative aspects of your work?

This is an opportunity for a supportive and robust discussion about how and why we do what we do. We welcome participants with all levels of experience, from complete beginners to old hands. Please come along and join in the conversation.


Biographies:

Stacy Carter is Professor and Founding Director at Research for Social Change, a research unit of the Faculty of Social Science at the University of Wollongong.

Vikki Entwistle is Professor and Director at the Centre for Biomedical Ethics in the Yong Loo Lin School of Medicine, National University of Singapore. Tamra Lysaght is an Assistant Professor in the same centre.

Bek McWhirter is a Research Fellow at the Centre for Law and Genetics, in the Faculty of Law & Menzies Institute for Medical Research at the University of Tasmania.

Stacy, Bek and Tamra are the stream leaders of the Empirical Ethics stream of AABHL. All four presenters are empirical bioethics researchers.

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.

Conference Managers

Please contact the team at Conference Design with any questions regarding the conference.

Photo Credits: Tourism Tasmania, Sean Fennessy, Luke Tscharke, Jess Bonde, Richard Strong, Jason Charles Hill,

© 2015 - 2016 Conference Design Pty Ltd