“Public Trust in Expert Knowledge: Narrative, Ethics, and Engagement” examines the social, cultural, and ethical ramifications of changing public trust in the expert biomedical knowledge systems of emergent and complex global societies. This symposium was conceived as an interdisciplinary project, drawing on bioethics, the social sciences, and the medical humanities. We settled on public trust as a topic for our work together because its problematization cuts across our fields and substantive research interests. For us, trust is simultaneously a matter of (...) ethics, social relations, and the cultural organization of meaning. We share a commitment to narrative inquiry across our fields of expertise in the bioethics of transformative health technologies, public communications on health threats, and narrative medicine. The contributions to this symposium have applied, in different ways and with different effects, this interdisciplinary mode of inquiry, supplying new reflections on public trust, expertise, and biomedical knowledge. (shrink)

The authority of bioethics as a field of inquiry and of bioethicists as scholars with a distinctive expertise is being questioned on various fronts. Sarah Franklin’s 2019 Nature commentary ‘Ethical research – the long and bumpy road from shirked to shared’ is the latest example. In this paper, we respond to these challenges by focusing on two key issues. First, we discuss the theory and practice of bioethics. We argue that both of these endeavours are fundamental components of this field (...) of inquiry and that bioethics cannot be reduced to the contribution that it makes to the production of biopolicy, as Franklin suggests. Second, we contend that bioethicists have distinctive skills and knowledge that place them at an epistemic advantage in discussing normative questions. Hence, we reject views that deny the specific contribution that bioethicists can bring to assessing the ethics and governance of science and technology. We conclude by arguing that—despite formal and substantive differences between disciplines—philosophers, social scientists and other scholars should join forces and engage in critical friendships rather than turf wars to move towards the just governance of science and technology. (shrink)

Background Parental refusal of routine childhood vaccination remains an ethically contested area. This systematic review sought to explore and characterise the normative arguments made about parental refusal of routine vaccination, with the aim of providing researchers, practitioners, and policymakers with a synthesis of current normative literature. Methods Nine databases covering health and ethics research were searched, and 121 publications identified for the period Jan 1998 to Mar 2022. For articles, source journals were categorised according to Australian Standard Field of Research (...) codes, and normative content was analysed using a framework analytical approach. Results Most of the articles were published in biomedical journals (34%), bioethics journals (21%), and journals that carry both classifications (20%). Two central questions dominated the literature: (1) Whether vaccine refusal is justifiable (which we labelled ‘refusal arguments’); and (2) Whether strategies for dealing with those who reject vaccines are justifiable (‘response arguments’). Refusal arguments relied on principlism, religious frameworks, the rights and obligations of parents, the rights of children, the medico-legal best interests of the child standard, and the potential to cause harm to others. Response arguments were broadly divided into arguments about policy, arguments about how individual physicians should practice regarding vaccine rejectors, and both legal precedents and ethical arguments for vaccinating children against a parent’s will. Policy arguments considered the normative significance of coercion, non-medical or conscientious objections, and possible reciprocal social efforts to offset vaccine refusal. Individual physician practice arguments covered nudging and coercive practices, patient dismissal, and the ethical and professional obligations of physicians. Most of the legal precedents discussed were from the American setting, with some from the United Kingdom. Conclusions This review provides a comprehensive picture of the scope and substance of normative arguments about vaccine refusal and responses to vaccine refusal. It can serve as a platform for future research to extend the current normative literature, better understand the role of cultural context in normative judgements about vaccination, and more comprehensively translate the nuance of ethical arguments into practice and policy. (shrink)

Lack of vaccine confidence can contribute to drops in vaccination coverage and subsequent outbreaks of diseases like measles and polio. Low trust in vaccines is attributed to a combination of factors, including lack of understanding, vaccine scares, flawed policies, social media and mistrust of vaccine manufacturers, scientists and decision-makers. The COVID-19 crisis has laid bare societies’ vulnerability to new pathogens and the critical role of vaccines in containing this and future pandemics. It has also put science at the forefront of (...) the response, with several governments relying on academics to help shape policy and communicate with the public. Against this backdrop, protecting public trust in scientists and scientific output is arguably more important than ever. Yet, conflicts of interest in biomedical research remain ubiquitous and harmful, and measures to curb them have had limited success. There is also evidence of bias in industry-sponsored vaccine studies and academics are voicing concerns about the risks of working in a CoI prevalent research area. Here, we set out to challenge established thinking with regard to vaccine confidence, by shifting the gaze from a deficit in public understanding towards probity in research relationships and suggesting an alternative and perhaps complementary strategy for addressing vaccine mistrust. We argue that a concerted effort needs to be made to revisit the norms that undergird contemporary vaccine research, coupled with a willingness of all stakeholders to reimagine those relationships with an emphasis on demonstrating trustworthiness and probity. (shrink)

The novel coronavirus (SARS-CoV-2) pandemic has refocused attention on the issue of mandatory vaccination. Some have suggested that vaccines ought to be mandatory, while others propose more moderate alternatives, such as incentives. This piece surveys a range of possible interventions, ranging from mandates through to education. All may have their place, depending on circumstances. However, it is worth clarifying the options available to policymakers, since there is sometimes confusion over whether a particular policy constitutes a mandate or not. Further, I (...) illustrate a different kind of alternative to mandatory vaccination. Rather than seeking less coercive alternatives to a mandate, we might instead employ an alternative mandate, which requires people to do something less than get vaccinated. For instance, we might merely require people to attend an appointment at a vaccine clinic. Whether this mandatory attendance policy is justified will depend on specific circumstances, but it represents another way to promote vaccination, without mandating it. In some cases, this may represent an appropriate balance between promoting public health goals and respecting individual liberty. (shrink)

The spread of vaccine misinformation may contribute to vaccine refusal/hesitancy and consequent harms. Nonetheless, censorship is often rejected on the grounds of free expression. This article examines John Stuart Mill’s influential defence of free expression but finds that his arguments for freedom apply only to normal, reasonably favourable circumstances. In other cases, it may be permissible to restrict freedom, including freedom of speech. Thus, while Mill would ordinarily defend the right to express false views, such as that vaccines cause autism, (...) he might have accepted restrictions on anti-vaccine misinformation during the present pandemic. This illustrates that even the staunchest defenders of free speech can permit temporary restrictions in exceptional circumstances. (shrink)