Public trust and expert knowledge: ethics, narrative and engagement
An interdisciplinary roundtable event facilitated by Associate Professor Mark Davis (Monash University), Dr Maria Vaccarella (University of Bristol), and Dr Silvia Camporesi (King’s College London)
School of Social Sciences, Monash University, 24 May 2016
11:00 am to 11:20 am
Pandemic communications, ‘the boy who cried wolf’ fable, and post-trust stories
Mark Davis, Monash University
In this paper I introduce the topic of trust and expert knowledge, with reference to public communications on pandemics and related public health threats. I outline some common social science framings of trust with reference to its importance in situations of uncertainty and ‘not knowing.’ I consider trust in terms of intersubjective life and narrative futures and make connections with public communications on pandemic influenza. Efforts to influence publics to take action on pandemic threats are important examples of how experts fashion communications under conditions of considerable uncertainty and, relatedly, the narrative shaping of how publics should conduct themselves. Drawing on interviews conducted for an ARC Discovery Project on the 2009 influenza pandemic, I examine how experts and publics engaged with the prospect of a global health threat. Because the 2009 pandemic turned out to be something of false alarm, I explore also the ensuing, post-trust story-telling on policy and individual responses to microbial threat to life.
Bio: Mark Davis is Associate Professor in the School of Social Sciences and has published widely on the public and expert responses to pandemics and emerging infectious diseases. His recent work has focussed on the turn to narrative in public health interventions.
11:20 am to 11:40 am
Climate change policy and the creation of mistrust: Leadership, expert knowledge and public engagement
Zareh Ghazarian, Monash University
As a phenomenon that crosses geopolitical boundaries, climate change poses a unique set of problems for political leaders and policy experts. It cannot be dealt with in individual constituencies. Rather, as arguably a consequence of market failure, it demands government intervention when the dominant mindset favours market solutions; and solutions will require broad consensus at a time when partisanship and political incivility are on the rise. Moreover, climate change has significant implications for bioethics as it intersects with health and technology and their impacts on society and environment.
The response to climate change by Australian political leaders exemplifies the difficulties we face. Rather than the political class reflecting scientific consensus by crafting a unified response, bipartisanship has deteriorated, reflecting contradictory political proclivities, increasing partisanship, and volatility in a constituency seeking political leadership. Given the bioethical and political significance of climate change, it is timely to explore the issue by using Australia as a case study. The paper analyses how leaders and experts engage and influence publics on the issue of climate change policy by examining primary documentation such as policy positions, parliamentary debates and party-political publications. It examines how notions of trust, political leadership and expert knowledge have impacted this important public policy arena. In doing so, it will construct new and innovative ways in which we can understand how public trust in expert knowledge is fostered or diminished by the mobilization of segmented opinion and partisan emotion.
Bio: Zareh Ghazarian is a Lecturer in Politics and International Relations at Monash University. Zareh most recent book is ‘The Making of a Party System’ (Monash University Publishing, 2015). Zareh is a leading commentator on politics and public policy and is regularly called upon by national and international media to provide political analysis.
11:40 am to 12:00 pm
Addiction veridiction: Trust, legal narratives and the emerging role of lawyers as addiction ‘quasi-experts’
Kate Seear, Monash University
In this presentation I explore the question of whether and in what ways the law and legal processes work to stabilise addiction as a ‘disease’. Using the work of Bruno Latour, I explore legal processes of what he calls ‘veridiction’ – or the specific processes by which law distinguishes truth from falsity – associated with addiction. I focus on processes that are largely hidden from public view and as such receive little scrutiny, but through which the meaning of addiction as a disease is secured. My aim is to consider the role of legal narratives and negotiations in establishing agreed facts, and to explore lawyers’ understanding of these processes. I argue that although in public discourse judges are ascribed the status of the law’s key decision-making figures, lawyers’ accounts do not necessarily support this view. Lawyers’ accounts of the judicial process foreground their own and other lawyers’ role as both key decision makers and addiction ‘quasi-experts’, despite an absence of training or education in the area. Lawyers’ accounts also suggest little independent oversight – even from judges – of the work that they do in stabilising addiction ‘facts’. This raises questions about the implicit significance of ‘trust’ as between judges and lawyers in the stabilisation of addiction facts. I argue that legal practices of veridiction are centrally implicated in the making of health and that elements of these processes, which are not often publicly visible or subjected to scrutiny, require more analysis.
Bio: Dr Kate Seear is an ARC DECRA fellow, a senior lecturer in the Faculty of Law at Monash, the Academic Director of the Springvale Monash Legal Service and the Co-Convenor of Legal Practice Programs. Her research combines sociology, feminist theory, science and technology studies and law.
12:00 pm to 12:20 pm
NIPT and trust in the NHS antenatal services: Conflicting values and incommensurable moral economies
Silvia Camporesi, King’s College, London
On January 18th, 2016 the UK National Screening Committee reported evidence that Non-Invasive Prenatal Testing (NIPT) is highly accurate for detection of foetal chromosomal aneuploidies (the presence of an abnormal number of chromosomes) including the detection of Down syndrome (trisomy 21), Edwards syndrome (trisomy 18) and Patau syndrome (trisomy 13), and recommended it for implementation through the National Health Service (NHS). It is expected that NIPT will be offered to all pregnant women in the UK –independently of their ‘risk’- as a means of non-invasive screening in 2017 or 2018.
In this paper I discuss how the implementation of NIPT as a screening to all pregnant women through the NHS is based on a presupposition of trust of women in the NHS, and on the expectation of their active engagement with their pregnancies and antenatal services. Women will be expected to be ‘good managers’ of their pregnancies, and to engage actively with the available screening technology. NIPT will be positioned as a ‘choice’ for pregnant women, entering the language of ‘NHS choices’ of antenatal care and maternity services. However, NIPT will shape the scope of women’s reproductive choices, in a way that will lead to a completely new level of ‘supervision’, ‘management’ and ‘scrutiny’ of human foetuses and pregnant women. For this reason I argue that NIPT should not be understood within the framework of ‘choice’, as the scope of the choice itself is going to be shaped by the implementation of the screening. Instead, NIPT should be positioned within the trajectory of prenatal diagnosis that, as argued by historian of medicine Ilana Löwy, displays the role of conflicting values and often incommensurable moral economies in the emergence of new technologies, and in their transformation into routine medical procedures. The two ‘often incommensurable moral economies’ are women’s autonomy and reproductive freedom as emphasised in gynaecologists and midwives/obstetricians’ public discourse; and considerations about the cost/efficacy of long-term care for people with Down Syndrome or other chromosomal-related abnormalities as emphasized in public health discourses. Both rest on a presupposition of trust in the NHS, and on the expectation of active engagement by pregnant women. I will show how these two contrasting narratives are also at play (more or less covertly) in the discourses around NIPT and argue that bioethics scholarship needs to engage proactively with the ethical issues arising the nexus of the two moral economies.
Dr Silvia Camporesi is a Lecturer in Bioethics & Society in the Department of Social Science, Health & Medicine at King’s College London, where she coordinates the MA in Bioethics & Society. Silvia is interested in the socio-ethical implications of genetic technologies in reproduction and sport. Her book From Bench to bedside to track and field: the context of enhancement and its ethical relevance was published for UC Medical Humanities Press in 2014. Her new book Bioethics Genetics and Sport (Routledge), co-authored with Mike McNamee, will be out late 2016.
2:00 pm to 2:20 pm
Trust and patient activism in the age of digital media: Lessons from the stem cell treatment market
Alan Petersen, Casimir MacGregor and Megan Munsie
New media are profoundly changing the meanings and practices of health and healthcare. This includes concepts of the patient, the expert and the established underpinning relations of trust. Increasingly, patients and their families are going online to source information and advice on possible treatments, joining with other patients to challenge once-trusted experts, and making contact with providers whose motives may be unclear and who sell treatments of unknown benefit. This paper examines the changing dynamics of trust in the age of digital media, focusing on the plight of those who pursue clinically unproven treatments and the context within which individual decisions about treatments are made. Drawing on data from an ARC project on stem cell tourism that focused on the experiences of Australian patients and carers who have travelled or contemplated travelling abroad for stem cell treatments and the views of those who have undertaken research or advised on or administered stem cell treatments, the paper will explore the shifting meanings of trust in a digitally mediated environment. The paper will discuss the significance of discourses of promise and hope in this environment, in buttressing certain truth claims about stem cell treatments and belief in their regenerative potential. Patient activists’ growing use of Web 2.0 digital media, we argue, calls for a rethinking of ‘trust’ in the context of health and healthcare, especially in regards to patients who have exhausted conventional treatment options.
Bio: Alan Petersen is Professor of Sociology in the School of Social Sciences at Monash University. His recent work has focused on the dynamics of promise, hope and expectation in relation to bioscience, biomedicine and biotechnology. His most recent book is Hope in Health: The Socio-Politics of Optimism (Palgrave, 2015). He has just completed an ARC funded project on stem cell tourism and a book outlining the findings will be published by Palgrave in 2016.
Casimir MacGregor is a Research Fellow in the School of Social Science, Monash University. He works at the intersection of social anthropology, science and technology studies, and public health. His empirical research focuses on social studies of biomedicine and the life sciences, particularly stem cell science, patient activism, clinical decision making, biolegitimacy and emerging treatment markets.
Megan Munsie is a scientist who combines her extensive technical expertise with an interest and understanding of the complex ethical, social and regulatory issues associated with stem cell science. Megan is based at The University of Melbourne where she heads the Education, Ethics, Law & Community Awareness Unit at the Australian Research Council-funded Stem Cells Australia initiative.
2:20 pm to 2:40 pm
Contestable diagnosis and the undermining of trust in medicine: the case of Parkinson’s disease
Narelle Warren, Monash University
Trust in public institutions is essential for the maintenance and generation of social order. This is especially the case for medicine, in which the giving of a diagnosis assumes an implicit trust exists on behalf of the diagnosed person, both in terms of trust in the purveyor of the medical information (usually a doctor) as well as in the information itself. The reasonably low prevalence of second opinions (6.5% to 33% of oncology patients; Tattersall et al., 2009; Phillip et al., 2010) highlights the high levels of trust that people in Australia generally have towards medicine. Yet some conditions, due to their nature, introduce tensions in the trust that patients have towards their health practitioners: Parkinson’s disease is one such condition. Parkinson’s disease is characterised by uncertainty, both in terms of its presentation and progression, with each person so diagnosed experiencing these differently. In addition, the diagnosis is never entirely certain, and is continually revised with every subsequent medical encounter. Generally, this means that the Parkinson’s diagnosis is made increasingly certain, but it can also mean that an alternative diagnosis is made. In this paper, I consider how this uncertainty undermines the trust that my participants had in their doctors, how this impacts on their subsequent condition management decisions, and the bioethical dilemmas that this introduces.
Bio: Narelle Warren is a medical anthropologist and lecturer in anthropology in the School of Social Sciences at Monash University. Her research is concerned with disability and disablement, recovery and adaptation in the context of chronic conditions, people’s narratives of living with neurological conditions, care and intimacy, and the influence of health systems on these in Australia and Malaysia.
2:40 pm to 3:00 pm
Trustworthy doctors, untrustworthy narrators: Literary theory and governmentality in the medical humanities
Maria Vaccarella, University of Bristol
Trustworthiness is often listed as one of the key areas that narrative interventions within medical education can help to develop. Essential to an engaged and empathic caring process, trustworthiness should originate from individual doctors’ sophisticated narrative competence to then have a broader beneficial impact on medicine at large. Narrative medicine – both a specific approach to medical education and one of the most applied ramifications of the medical humanities – is the formative arena for this kind of clinical practice: health professionals are trained to build upon the subtleties of literary analysis to gain better insight into patients’ (hi)stories, as well as to work through their own emotional involvement, traditionally perceived as an unwelcome source of inaccuracy and unreliability.
In this talk, I would like to complicate this straightforward equation between health professionals’ enhanced narrative competence and improved trust in the doctor-patient relationship, by revisiting current scholarly debates in literary theory on the authorial implicit strategies behind the construction of untrustworthy narrators. I would like to argue that, though by no means exclusive to the medical context, technologies of power significantly affect empathic responses to narratives in the clinic and call for a rethinking of conventional aesthetics of production and reception within the medical humanities.
Bio: Dr Maria Vaccarella in Lecturer in Medical Humanities at the University of Bristol (UK). Previously a Postdoctoral Research Fellow in Medical Humanities at the Centre for the Humanities and Health, King’s College London, Dr Vaccarella works on literature and medicine (especially neurology), narrative medicine and critical disability studies. Her most recent publication is “Disembodiment and Identity in Literary Depictions of Epilepsy Surgery,” Literature and Medicine 33.1 (2015): 1-22.
3:00 pm to 4:00 pm
Discussants: Dr Julian Millie (ARC Future Fellow, Anthropology, School of Social Sciences, Monash University) and Associate Professor Catherine Mills (ARC Future Fellow, Centre for Human Bioethics, School of Philosophical, Historical & International Studies, Monash University).
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