How should artificial intelligence be used in Australian health care? Recommendations from a citizens' jury.

OBJECTIVE: To support a diverse sample of Australians to make recommendations about the use of artificial intelligence (AI) technology in health care. STUDY DESIGN: Citizens' jury, deliberating the question: "Under which circumstances, if any, should artificial intelligence be used in Australian health systems to detect or diagnose disease?" SETTING, PARTICIPANTS: Thirty Australian adults recruited by Sortition Foundation using random invitation and stratified selection to reflect population proportions by gender, age, ancestry, highest level of education, and residential location (state/territory; urban, regional, rural). The jury process took 18 days (16 March - 2 April 2023): fifteen days online and three days face-to-face in Sydney, where the jurors, both in small groups and together, were informed about and discussed the question, and developed recommendations with reasons. Jurors received extensive information: a printed handbook, online documents, and recorded presentations by four expert speakers. Jurors asked questions and received answers from the experts during the online period of the process, and during the first day of the face-to-face meeting. MAIN OUTCOME MEASURES: Jury recommendations, with reasons. RESULTS: The jurors recommended an overarching, independently governed charter and framework for health care AI. The other nine recommendation categories concerned balancing benefits and harms; fairness and bias; patients' rights and choices; clinical governance and training; technical governance and standards; data governance and use; open source software; AI evaluation and assessment; and education and communication. CONCLUSIONS: The deliberative process supported a nationally representative sample of citizens to construct recommendations about how AI in health care should be developed, used, and governed. Recommendations derived using such methods could guide clinicians, policy makers, AI researchers and developers, and health service users to develop approaches that ensure trustworthy and responsible use of this technology.

Patients' perspectives on quality and patient safety failures: lessons learned from an inquiry into transvaginal mesh in Australia.

BACKGROUND: Transvaginal mesh (TVM) surgeries emerged as an innovative treatment for stress urine incontinency and/or pelvic organ prolapse in 1996. Years after rapid adoption of these surgeries into practice, they are a key example of worldwide failure of healthcare quality and patient safety. The prevalence of TVM-associated harms eventually prompted action globally, including an Australian Commonwealth Government Senate Inquiry in 2017. METHOD: We analysed 425 submissions made by women (n = 417) and their advocates (n = 8) to the Australian Senate Inquiry, and documents from 5 public hearings, using deductive and inductive coding, categorisation and thematic analysis informed by three 'linked dilemmas' from healthcare quality and safety theory. We focused on women's accounts of: a) how harms arose from TVM procedures, and b) micro, meso and macro factors that contributed to their experience. Our aim was to explain, from a patient perspective, how these harms persisted in Australian healthcare, and to identify mechanisms at micro, meso and macro levels explaining quality and safety system failure. RESULTS: Our findings suggest three mechanisms explaining quality and safety failure: 1. Individual clinicians could ignore cases of TVM injury or define them as 'non-preventable'; 2. Women could not go beyond their treating clinicians to participate in defining and governing quality and safety; and. 3. Health services set thresholds for concern based on proportion of cases harmed, not absolute number or severity of harms. CONCLUSION: We argue that privileging clinical perspectives over patient perspectives in evaluating TVM outcomes allowed micro-level actors to dismiss women's lived experience, such that women's accounts of harms had insufficient or no weight at meso and macro levels. Establishing system-wide expectations regarding responsiveness to patients, and communication of patient reported outcomes in evaluation of healthcare delivery, may help prevent similar failures.

Evidence gaps and challenges in maintaining and increasing vaccine uptake: A Delphi survey with Australian stakeholders.

ISSUE ADDRESSED: Increasing and maintaining vaccination uptake is crucial for preventing and managing infectious diseases. In the context of the post-coronavirus disease 2019 (COVID-19) pandemic landscape, this paper examines the perceptions of immunisation implementers and policymakers to uncover the challenges and evidence gaps in routine immunisation efforts. METHODS: We conducted an online two-round modified Delphi survey with immunisation experts, senior public servants, policymakers, policy advisory groups, and representatives from peak bodies from across Australia. We asked respondents to outline what they see as the greatest challenges to increasing and maintaining uptake of recommended vaccines in Australia; the most difficult aspects of their work in vaccination; the largest evidence gaps in vaccine uptake; and the kinds of social and behavioural research they would like to see prioritised. RESULTS: The two most important challenges for increasing and maintaining vaccine uptake were effectively communicating the benefits of vaccines to parents and the public and ensuring accessible and affordable vaccination services. Participants strongly agreed that 'communication about the importance of vaccination' was the most difficult aspect of their work. Consistently important was the need to better engage specific population groups, such as culturally and linguistically diverse people, pregnant people, at risk cohorts, and health care providers. Social and behavioural research about 'how to effectively address hesitancy' was ranked highly among participants. CONCLUSIONS: Findings from this project help provide an understanding of the behavioural, social, ethical, and policy knowledge needs for immunisation policy and implementation in Australia. To respond to vaccine challenges, increase coverage and build public trust in vaccination, policymakers and governments should incorporate social research into vaccination programmes. SO WHAT?: Australia is preparing to launch a Centre for Disease Control. This study demonstrates the importance of integrating social, behavioural, ethical, and policy research into the fabric of this new enterprise. It underlines the need to capacity-build a workforce able to deliver high-quality research in these areas, address the needs of immunisation implementers and policymakers, and achieve good outcomes for Australians.

Practical, epistemic and normative implications of algorithmic bias in healthcare artificial intelligence: a qualitative study of multidisciplinary expert perspectives.

BACKGROUND: There is a growing concern about artificial intelligence (AI) applications in healthcare that can disadvantage already under-represented and marginalised groups (eg, based on gender or race). OBJECTIVES: Our objectives are to canvas the range of strategies stakeholders endorse in attempting to mitigate algorithmic bias, and to consider the ethical question of responsibility for algorithmic bias. METHODOLOGY: The study involves in-depth, semistructured interviews with healthcare workers, screening programme managers, consumer health representatives, regulators, data scientists and developers. RESULTS: Findings reveal considerable divergent views on three key issues. First, views on whether bias is a problem in healthcare AI varied, with most participants agreeing bias is a problem (which we call the bias-critical view), a small number believing the opposite (the bias-denial view), and some arguing that the benefits of AI outweigh any harms or wrongs arising from the bias problem (the bias-apologist view). Second, there was a disagreement on the strategies to mitigate bias, and who is responsible for such strategies. Finally, there were divergent views on whether to include or exclude sociocultural identifiers (eg, race, ethnicity or gender-diverse identities) in the development of AI as a way to mitigate bias. CONCLUSION/SIGNIFICANCE: Based on the views of participants, we set out responses that stakeholders might pursue, including greater interdisciplinary collaboration, tailored stakeholder engagement activities, empirical studies to understand algorithmic bias and strategies to modify dominant approaches in AI development such as the use of participatory methods, and increased diversity and inclusion in research teams and research participant recruitment and selection.

Transvaginal mesh in Australia: An analysis of news media reporting from 1996 to 2021.

INTRODUCTION: Transvaginal mesh (mesh) surgeries have been used to treat stress urinary incontinence (incontinence) and/or pelvic organ prolapse (prolapse). In Australia, as in many other countries, the harms caused by mesh eventually prompted individual and collective attempts to achieve redress. The rise of mesh surgery as a procedure, the experience of mesh-affected women and the formal inquiries and legal actions that followed all occurred in social, cultural and discursive contexts. One strategy to understand these contexts is to track how the mesh and key actors in the mesh stories have been portrayed in mass media sources. We conducted a media analysis of the most highly read Australian newspapers and online news media platforms, focusing on how mesh and the interaction of stakeholders in mesh stories were presented to the Australian public. METHOD: We searched systematically in the top 10 most-read print and online media outlets in Australia. We included all articles that mentioned mesh, from the date of first use of mesh in Australia to the date of our final search (1996-2021). RESULT: After early scant media reporting focusing on the benefits of mesh procedures, major Australian medicolegal processes created a hook to shift reporting about mesh. The news media then played a significant role in redressing women's experienced epistemic injustice, including by amplifying previously ignored evidence of harm. This created an opportunity for previously unreported suffering to be revealed to powerful actors, in settings beyond the immediate control and epistemic authority of healthcare stakeholders, validating women's testimony and creating new hermeneutic resources for understanding mesh. Over time, media reports show healthcare stakeholders responding sympathetically to these new understandings in public discourse, contrasting with their statements in earlier media coverage. CONCLUSION: We argue that mass media reporting, in synergy with medicolegal actions and the Australian Senate Inquiry, appears to have provided women with greater epistemic justice, giving their testimony privileged epistemic status such that it was considered by powerful actors. Although medical reporting is not recognised in the hierarchy of evidence embedded in the medical knowledge system, in this case, media reporting appears to have contributed to shaping medical knowledge in significant ways. PATIENT OR PUBLIC CONTRIBUTION: We used publicly available data, print and online media outlets, for our analysis. Therefore, this manuscript does not contain the direct contribution of patients, service users, caregivers, people with lived experience or members of the public.

Childhood vaccine refusal and what to do about it: a systematic review of the ethical literature.

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.

'Get your own house in order': Qualitative dialogue groups with nonvaccinating parents on how measles outbreaks in their community should be managed.

OBJECTIVE: Communities with high levels of vaccine rejection present unique challenges to vaccine-preventable disease outbreak management. We sought perspectives of nonvaccinating parents to inform public health responses in such communities. METHODS: Nineteen purposively sampled nonvaccinating Australian parents participated in one of seven online dialogue groups. We asked what they thought parents, school principals and public health professionals should do in a hypothetical school measles outbreak and used a framework approach to data analysis. RESULTS: Parents' views were grounded in strong beliefs in parental responsibility and the belief that vaccines are not effective, thus unvaccinated children do not therefore pose a threat. They then reasoned that the forced exclusion of unvaccinated children from school in a measles outbreak was disproportionate to the risk they pose, and their child's right to education should not be overridden. Nonvaccinating parents judged that all parents should keep sick children at home regardless of disease or vaccination status; that school principals should communicate directly with parents and avoid using social media; that public health professionals should provide information to parents so they can decide for themselves about excluding their children from school; that public health responses should avoid accidental identification of unvaccinated children and that mainstream media should be avoided as a communication tool. CONCLUSION: Nonvaccinating parents do not always agree with current Australian approaches to measles outbreak management. Their perspectives can inform approaches to outbreak responses in communities with high levels of vaccine rejection. PATIENT OR PUBLIC CONTRIBUTION: We sought input from individuals who did and did not vaccinate on study design in its early phases. Individual conversations were used deliberately as we felt the group advisory situation may have felt less safe for nonvaccinating parents, given the divisive and often hostile nature of the topic.

Reimagining consumer involvement: Resilient system indicators in the COVID-19 pandemic response in New South Wales, Australia.

BACKGROUND: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. METHODS: In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. RESULTS: The pause in consumer engagement to support health service decision-making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. CONCLUSION: The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. PATIENT OR PUBLIC CONTRIBUTION: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.

The Adoption of Artificial Intelligence in Health Care and Social Services in Australia: Findings From a Methodologically Innovative National Survey of Values and Attitudes (the AVA-AI Study).

BACKGROUND: Artificial intelligence (AI) for use in health care and social services is rapidly developing, but this has significant ethical, legal, and social implications. Theoretical and conceptual research in AI ethics needs to be complemented with empirical research to understand the values and judgments of members of the public, who will be the ultimate recipients of AI-enabled services. OBJECTIVE: The aim of the Australian Values and Attitudes on AI (AVA-AI) study was to assess and compare Australians' general and particular judgments regarding the use of AI, compare Australians' judgments regarding different health care and social service applications of AI, and determine the attributes of health care and social service AI systems that Australians consider most important. METHODS: We conducted a survey of the Australian population using an innovative sampling and weighting methodology involving 2 sample components: one from an omnibus survey using a sample selected using scientific probability sampling methods and one from a nonprobability-sampled web-based panel. The web-based panel sample was calibrated to the omnibus survey sample using behavioral, lifestyle, and sociodemographic variables. Univariate and bivariate analyses were performed. RESULTS: We included weighted responses from 1950 Australians in the web-based panel along with a further 2498 responses from the omnibus survey for a subset of questions. Both weighted samples were sociodemographically well spread. An estimated 60% of Australians support the development of AI in general but, in specific health care scenarios, this diminishes to between 27% and 43% and, for social service scenarios, between 31% and 39%. Although all ethical and social dimensions of AI presented were rated as important, accuracy was consistently the most important and reducing costs the least important. Speed was also consistently lower in importance. In total, 4 in 5 Australians valued continued human contact and discretion in service provision more than any speed, accuracy, or convenience that AI systems might provide. CONCLUSIONS: The ethical and social dimensions of AI systems matter to Australians. Most think AI systems should augment rather than replace humans in the provision of both health care and social services. Although expressing broad support for AI, people made finely tuned judgments about the acceptability of particular AI applications with different potential benefits and downsides. Further qualitative research is needed to understand the reasons underpinning these judgments. The participation of ethicists, social scientists, and the public can help guide AI development and implementation, particularly in sensitive and value-laden domains such as health care and social services.

Ethical Guidance for Hard Decisions: A Critical Review of Early International COVID-19 ICU Triage Guidelines.

This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources.

Overdiagnosis: one concept, three perspectives, and a model.

Defining, estimating, communicating about, and dealing with overdiagnosis is challenging. One reason for this is because overdiagnosis is a complex phenomenon. In this article we try to show that the complexity can be analysed and addressed in terms of three perspectives, i.e., that of the person, the professional, and the population. Individuals are informed about overdiagnosis based on population-based estimates. These estimates depend on professionals' conceptions and models of disease and diagnostic criteria. These conceptions in turn depend on individuals' experience of suffering, and on population level outcomes from diagnostics and treatment. As the personal, professional, and populational perspectives are not easy to reconcile, we must address them explicitly and facilitate interaction. Population-based estimates of overdiagnosis must be more directly informed by personal need for information. So must disease definitions and diagnostic criteria. Only then can individuals be appropriately informed about overdiagnosis.

Sharing administrative health data with private industry: A report on two citizens' juries.

BACKGROUND: There is good evidence of both community support for sharing public sector administrative health data in the public interest and concern about data security, misuse and loss of control over health information, particularly if private sector organizations are the data recipients. To date, there is little research describing the perspectives of informed community members on private sector use of public health data and, particularly, on the conditions under which that use might be justified. METHODS: Two citizens' juries were held in February 2020 in two locations close to Sydney, Australia. Jurors considered the charge: 'Under what circumstances is it permissible for governments to share health data with private industry for research and development?' RESULTS: All jurors, bar one, in principle supported sharing government administrative health data with private industry for research and development. The support was conditional and the juries' recommendations specifying these conditions related closely to the concerns they identified in deliberation. CONCLUSION: The outcomes of the deliberative processes suggest that informed Australian citizens are willing to accept sharing their administrative health data, including with private industry, providing the intended purpose is clearly of public benefit, sharing occurs responsibly in a framework of accountability, and the data are securely held. PATIENT AND PUBLIC CONTRIBUTION: The design of the jury was guided by an Advisory Group including representatives from a health consumer organization. The jurors themselves were selected to be descriptively representative of their communities and with independent facilitation wrote the recommendations.

Evaluation of artificial intelligence clinical applications: Detailed case analyses show value of healthcare ethics approach in identifying patient care issues.

This paper is one of the first to analyse the ethical implications of specific healthcare artificial intelligence (AI) applications, and the first to provide a detailed analysis of AI-based systems for clinical decision support. AI is increasingly being deployed across multiple domains. In response, a plethora of ethical guidelines and principles for general AI use have been published, with some convergence about which ethical concepts are relevant to this new technology. However, few of these frameworks are healthcare-specific, and there has been limited examination of actual AI applications in healthcare. Our ethical evaluation identifies context- and case-specific healthcare ethical issues for two applications, and investigates the extent to which the general ethical principles for AI-assisted healthcare expressed in existing frameworks capture what is most ethically relevant from the perspective of healthcare ethics. We provide a detailed description and analysis of two AI-based systems for clinical decision support (Painchek® and IDx-DR). Our results identify ethical challenges associated with potentially deceptive promissory claims, lack of patient and public involvement in healthcare AI development and deployment, and lack of attention to the impact of AIs on healthcare relationships. Our analysis also highlights the close connection between evaluation and technical development and reporting. Critical appraisal frameworks for healthcare AIs should include explicit ethical evaluation with benchmarks. However, each application will require scrutiny across the AI life-cycle to identify ethical issues specific to healthcare. This level of analysis requires more attention to detail than is suggested by current ethical guidance or frameworks.

The role of older patients' goals in GP decision-making about medicines: a qualitative study.

BACKGROUND: To optimise medication use in older people, it is recommended that clinicians evaluate evidence on potential benefits and harms of medicines in light of the patients' overall health, values and goals. This suggests general practitioners (GPs) should attempt to facilitate patient involvement in decision-making. In practice this is often challenging. In this qualitative study, we explored GPs' perspectives on the importance of discussing patients' goals and preferences, and the role patient preferences play in medicines management and prioritisation. METHODS: Semi-structured interviews were conducted with GPs from Australia (n = 32). Participants were purposively sampled to recruit GPs with variation in experience level and geographic location. Transcribed audio-recordings of interviews were coded using Framework Analysis. RESULTS: The results showed that most GPs recognised some value in understanding older patients' goals and preferences regarding their medicines. Most reported some discussions of goals and preferences with patients, but often this was initiated by the patient. Practical barriers were reported such as limited time during busy consultations to discuss issues beyond acute problems. GPs differed on the following main themes: 1) definition and perception of patients' goals, 2) relationship with the patient, 3) approach to medicines management and prioritisation. We observed that GPs preferred one of three different practice patterns in their approach to patients' goals in medicines decisions: 1) goals and preferences considered lower priority - 'Directive'; 2) goals seen as central - 'Goal-oriented'; 3) goals and preferences considered but not explicitly elicited - 'Tacit'. CONCLUSIONS: This study explores how GPs differ in their approach to eliciting patients' goals and preferences, and how these differences are operationalised in the context of older adults taking multiple medicines. Although there are challenges in providing care that aligns with patients' goals and preferences, this study shows how complex decisions are made between GPs and their older patients in clinical practice. This work may inform future research that investigates how GPs can best incorporate the priorities of older people in decision-making around medicines. Developing practical support strategies may assist clinicians to involve patients in discussions about their medicines.

Sharing Government Health Data With the Private Sector: Community Attitudes Survey.

BACKGROUND: The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. OBJECTIVE: This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. METHODS: A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. RESULTS: The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants' views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people's health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government's capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population. CONCLUSIONS: This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

Perspectives of Vietnamese, Sudanese and South Sudanese immigrants on targeting migrant communities for latent tuberculosis screening and treatment in low-incidence settings: A report on two Victorian community panels.

BACKGROUND: Tuberculosis (TB) elimination strategies in Australia require a focus on groups who are at highest risk of TB infection, such as immigrants from high-burden settings. Understanding attitudes to different strategies for latent TB infection (LTBI) screening and treatment is an important element of justifiable elimination strategies. METHOD: Two community panels were conducted in Melbourne with members of the Vietnamese (n = 11), Sudanese and South Sudanese communities (n = 9). Panellists were provided with expert information about LTBI and different screening and health communication strategies, then deliberated on how best to pursue TB elimination in Australia. FINDINGS: Both panels unanimously preferred LTBI screening to occur pre-migration rather than in Australia. Participants were concerned that post-migration screening would reach fewer migrants, noted that conducting LTBI screening in Australia could stigmatize participants and that poor awareness of LTBI would hamper participation. If targeted screening was to occur in Australia, the Vietnamese panel preferred 'place-based' communication strategies, whereas the Sudanese and South Sudanese panel emphasized that community leaders should lead communication strategies to minimize stigma. Both groups emphasized the importance of maintaining community trust in Australian health service providers, and the need to ensure targeting did not undermine this trust. CONCLUSION: Pre-migration screening was preferred. If post-migration screening is necessary, the potential for stigma should be reduced, benefit and risk profile clearly explained and culturally appropriate communication strategies employed. Cultural attitudes to health providers, personal health management and broader social vulnerabilities of targeted groups need to be considered in the design of screening programs.

Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries.

BACKGROUND: Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies - pathogen whole genome sequencing (WGS) and Big Data analytics - promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. METHOD: Four community juries were convened in two demographically different Sydney municipalities and two regional cities in New South Wales, Australia (western Sydney, Wollongong, Tamworth, eastern Sydney) to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. RESULTS: Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. CONCLUSIONS: Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected.

Reporting of screening and diagnostic AI rarely acknowledges ethical, legal, and social implications: a mass media frame analysis.

BACKGROUND: Healthcare is a rapidly expanding area of application for Artificial Intelligence (AI). Although there is considerable excitement about its potential, there are also substantial concerns about the negative impacts of these technologies. Since screening and diagnostic AI tools now have the potential to fundamentally change the healthcare landscape, it is important to understand how these tools are being represented to the public via the media. METHODS: Using a framing theory approach, we analysed how screening and diagnostic AI was represented in the media and the frequency with which media articles addressed the benefits and the ethical, legal, and social implications (ELSIs) of screening and diagnostic AI. RESULTS: All the media articles coded (n = 136) fit into at least one of three frames: social progress (n = 131), economic development (n = 59), and alternative perspectives (n = 9). Most of the articles were positively framed, with 135 of the articles discussing benefits of screening and diagnostic AI, and only 9 articles discussing the ethical, legal, and social implications. CONCLUSIONS: We found that media reporting of screening and diagnostic AI predominantly framed the technology as a source of social progress and economic development. Screening and diagnostic AI may be represented more positively in the mass media than AI in general. This represents an opportunity for health journalists to provide publics with deeper analysis of the ethical, legal, and social implications of screening and diagnostic AI, and to do so now before these technologies become firmly embedded in everyday healthcare delivery.

Developing and applying a deductive coding framework to assess the goals of Citizen/Community Jury deliberations.

BACKGROUND: Public participation in health policy decision making is thought to improve the quality of the decisions and enhance their legitimacy. Citizen/Community Juries (CJs) are a form of public participation that aims to elicit an informed community perspective on controversial topics. Reporting standards for CJ processes have already been proposed. However, less clarity exists about the standards for what constitutes a good quality CJ deliberation-we aim to begin to address this gap here. METHODS: We identified the goals that underlie CJs and searched the literature to identify existing frameworks assessing the quality of CJ deliberations. We then mapped the items constituting these frameworks onto the CJ goals; where none of the frameworks addressed one of the CJ goals, we generated additional items that did map onto the goal. RESULTS: This yielded a single operationalized deductive coding framework, consisting of four deliberation elements and four recommendation elements. The deliberation elements focus on the following: jurors' preferences and values, engagement with each other, referencing expert information and enrichment of the deliberation. The recommendation elements focus on the following: reaching a clear and identifiable recommendation, whether the recommendation directly addresses the CJ question, justification for the recommendation and adoption of societal (rather than individual) perspective. To explore the alignment between this framework and the goals underlying CJs, we mapped the operationalized framework onto the transcripts of a CJ. CONCLUSION: Results suggest that framework items map well onto what transpires in an actual CJ deliberation. Further testing of the validity, generalizability and reliability of the framework is planned.

Risk, Overdiagnosis and Ethical Justifications.

Many healthcare practices expose people to risks of harmful outcomes. However, the major theories of moral philosophy struggle to assess whether, when and why it is ethically justifiable to expose individuals to risks, as opposed to actually harming them. Sven Ove Hansson has proposed an approach to the ethical assessment of risk imposition that encourages attention to factors including questions of justice in the distribution of advantage and risk, people's acceptance or otherwise of risks, and the scope individuals have to influence the practices that generate risk. This paper investigates the ethical justifiability of preventive healthcare practices that expose people to risks including overdiagnosis. We applied Hansson's framework to three such practices: an 'ideal' breast screening service, a commercial personal genome testing service, and a guideline that lowers the diagnostic threshold for hypertension. The framework was challenging to apply, not least because healthcare has unclear boundaries and involves highly complex practices. Nonetheless, the framework encouraged attention to issues that would be widely recognised as morally pertinent. Our assessment supports the view that at least some preventive healthcare practices that impose risks including that of overdiagnosis are not ethically justifiable. Further work is however needed to develop and/or test refined assessment criteria and guidance for applying them.