This article draws on an empirical investigation of how Australia’s cervical screening program came to be the way it is. The study was carried out using grounded theory methodology and primarily uses interviews with experts involved in establishing, updating or administering the program. We found strong differences in experts’ normative evaluations of the program and beliefs about optimal ways of achieving the same basic outcome: a reduction in morbidity and mortality caused by invasive cervical cancer. Our analysis demonstrates how variations (...) in values and preferences associated with key concepts underpinning public health such as benefit, harm and burden led to different perspectives on the purpose of an organized cervical screening program. These variations were largely driven by different bases of professional experience. Differently conceived purposes in turn led to conflict over how the program should be operationalized. Following Frith’s model of empirical bioethics, the results of the study both draw on and inform the existing public health and screening ethics literature. (shrink)

In the past decade, numerous ethical frameworks have been developed to support public health decision‐making in challenging areas. Before the COVID‐19 pandemic began, members of the authorship team were involved in research programmes, in which the development of ethical frameworks was planned, to guide (a) the use of new technologies for emerging infectious disease surveillance; and (b) the allocation of scarce supplies of pandemic influenza vaccine. However, as the pandemic evolved, significant practical challenges emerged that led to our questioning the (...) value of these frameworks. We now believe that a normative instrument, such as a framework, cannot adequately or reliably provide the ethical guidance that needs to be incorporated into public health decision‐making during natural disasters or infectious disease emergencies. Recently it has been suggested that there are potentially more dynamic, flexible, and effective ways to navigate decisions involving complex considerations entailed in policies and practices during a public health emergency. In this paper, we first outline the key functions of a public health ethics framework, before describing why we believe it would not be fit for purpose during a crisis. We end by considering whether proposed alternative methods to promote ethical public health decision‐making goals have the potential to meet these objectives. (shrink)

Background Genomic research is challenging the tradition of informed consent. Genomic researchers in the USA, Canada and parts of Europe are encouraged to use informed consent to address the prospect of disclosing individual research results (IRRs) to study participants. In the USA, no national policy exists to direct this use of informed consent, and it is unclear how local institutional review boards (IRBs) may want researchers to respond. Objective and methods To explore publicly accessible IRB websites for guidance in this (...) area, using summative content analysis. Findings Three types of research results were addressed in 45 informed consent templates and instructions from 20 IRBs based at centres conducting genomic research: (1) IRRs in general, (2) incidental findings (IFs) and (3) a broad and unspecified category of ‘significant new findings’ (SNFs). IRRs were more frequently referenced than IFs or SNFs. Most documents stated that access to IRRs would not be an option for research participants. These non-disclosure statements were found to coexist in some documents with statements that SNFs would be disclosed to participants if related to their willingness to participate in research. The median readability of template language on IRRs, IFs and SNFs exceeded a ninth-grade level. Conclusion IRB guidance may downplay the possibility of IFs and contain conflicting messages on IRR non-disclosure and SNF disclosure. IRBs may need to clarify why separate IRR and SNF language should appear in the same consent document. The extent of these issues, nationally and internationally, needs to be determined. (shrink)

In late March 2020 in response to the COVID-19 pandemic, Australia introduced mandatory 14-day supervised quarantine at hotels and other designated facilities for all international arrivals. From July 2020, most states and territories introduced a fixed charge for quarantine of up to $3220 per adult. The introduction of the fee was rationalised on the basis that Australians had been allowed sufficient time to return and there was a need to recover some of the cost associated with administering the program. Drawing (...) on an empirical study of 58 returned Australian citizens and residents quarantined between March 2020 and January 2021, this paper aims to explore how people experienced paying for hotel quarantine, particularly with respect to fairness and relatedly, the principle of reciprocity. Reciprocity requires that the state has an obligation to assist individuals in discharging their duty to comply with public health measures and avoid disproportionate burdens accruing to populations or individuals. Though participants had varying opinions on whether they thought it fair to be charged for their quarantine, for many, the fee constituted a significant burden and source of stress. Given the undertaking of quarantine is primarily for the benefit of the public good, we argue the financial cost imposed on individuals does not meet the demands of reciprocity. It is imperative that future quarantine and isolation arrangements consider seriously the need to minimise burdens of individuals subject to such measures, and that fees do not become a new norm in public health and infectious disease control. (shrink)

This paper aims to interrogate the potential and challenges in interdisciplinary working across disciplinary boundaries by examining a longitudinal partnership designed to research student experiences of digital technologies in undergraduate medicine established by the two authors. The paper is situated in current methodological trends including the changing value of replicability and evidence based methods and increases in qualitative and mixed methods studies in Medical Education, whilst education research has seen growing encouragement for randomised controlled trials and large-scale quantitative studies. A (...) critical analysis of the partnership interactions is framed by Holland’s positional and imagined identities, negotiated across ‘figured’ worlds and the concept of epistemic games that guide knowledge construction. We consider social, political and cultural challenges and how ‘in between’ sites of knowledge were established where the academic identity of each was shaped by engaging with the other and new theoretical, methodological and ethical understandings were co-constructed. The paper concludes that despite the on-going challenges, ‘bottom up’ partnerships can contribute to a growth in interdisciplinarity which might itself be understood as a boundary object. Interdisciplinarity necessitates improvisation and boundary crossing and can therefore always be considered a matter of negotiation, creativity and collaboration. (shrink)

BackgroundCervical cancer disproportionately burdens disadvantaged women. Organised cervical screening aims to make cancer prevention available to all women in a population, yet screening uptake and cancer incidence and mortality are strongly correlated with socioeconomic status. Reaching underscreened populations is a stated priority in many screening programs, usually with an emphasis on something like ‘equity’. Equity is a poorly defined and understood concept. We aimed to explain experts’ perspectives on how cervical screening programs might justifiably respond to ‘the underscreened’.MethodsThis paper reports (...) on a grounded theory study of cervical screening experts involved in program organisation. Participants were 23 experts from several countries and a range of backgrounds: gynecology; epidemiology; public health; pathology; general practice; policy making. Data were gathered via semi-structured interview and concepts developed through transcript coding and memo writing.ResultsMost experts expressed an intuitive commitment to reducing systematic differences in screening participation or cancer outcomes. They took three different implicit positions, however, on what made organised programs justifiable with respect to underscreened populations. These were: 1) accepting that population screening is likely to miss certain disenfranchised groups for practical and cultural reasons, and focusing on maximising mainstream reach; 2) identifying and removing barriers to screening; and 3) providing parallel tailored screening services that attended to different cultural needs. Positions tended to fall along country of practice lines.ConclusionsExperts emphasised the provision of opportunity for underscreened populations to take up screening. A focus on opportunity appeared to rely on tacit premises not supported by evidence: that provision of meaningful opportunity leads to increased uptake, and that increased uptake of an initial screening test by disadvantaged populations would decrease cervical cancer incidence and mortality. There was little attention to anything other than the point of testing, or the difficulties disadvantaged women can have in accessing follow up care. The different approaches to ‘improving equity’ taken by participants are differently justified, and differently justifiable, but none attend directly to the broader conditions of disadvantage. (shrink)

Background The world is threatened by future pandemics. Vaccines can play a key role in preventing harm, but there will inevitably be shortages because there is no possibility of advance stockpiling. We therefore need some method of prioritising access. Main text This paper reports a critical interpretative review of the published literature that discusses ethical arguments used to justify how we could prioritise vaccine during an influenza pandemic. We found that the focus of the literature was often on proposing different (...) groups as priorities. Different reasons were often suggested as a means of justifying such priority groupings. We suggest that much of the literature, wrongly, assumes that we are able to plan priority groups prior to the time of a particular pandemic and development of a particular vaccine. We also point out the surprising absence of various issues from the literature. Conclusions The literature proposes a wide range of ways to prioritise vaccines, focusing on different groups and ‘principles’. Any plan to use pandemic vaccine must provide justifications for its prioritisation. The focus of this review was influenza pandemic vaccines, but lessons can be learnt for future allocations of coronavirus vaccine, if one becomes available. (shrink)