Population screening for early-stage cancer or cancer precursors began in the mid-twentieth century, with the goal of reducing suffering from cancer illness and lengthening average life by preventing cancer deaths. Since the establishment of cancer screening, concerns have emerged that it may be doing considerable harm; despite this, screening practices have remained relatively intractable. This intractability in the face of harm is the central problematic of my analysis. I reinterpret a large study of breast, cervical and prostate cancer screening completed recently by our Australian research group, working across empirical bioethics, public health and social science. I suggest three reasons why cancer screening might persist as it does, and thus reach conclusions about what might be required to make cancer screening systems more responsive to the potential for harm.
The Routledge Handbook of Feminist Bioethics is an outstanding resource for anyone with an interest in feminist bioethics, with chapters covering topics from justice and power to the climate crisis. Comprising forty-two chapters by emerging and established scholars, the volume is divided into six parts: I Foundations of feminist bioethics II Identity and identifications III Science, technology and research IV Health and social care V Reproduction and making families VI Widening the scope of feminist bioethics The volume is essential reading for anyone with an interest in bioethics or feminist philosophy, and will prove an invaluable resource for scholars, teachers and advanced students.
Breast cancer care is a leading area for development of artificial intelligence (AI), with applications including screening and diagnosis, risk calculation, prognostication and clinical decision-support, management planning, and precision medicine. We review the ethical, legal and social implications of these developments. We consider the values encoded in algorithms, the need to evaluate outcomes, and issues of bias and transferability, data ownership, confidentiality and consent, and legal, moral and professional responsibility. We consider potential effects for patients, including on trust in healthcare, and provide some social science explanations for the apparent rush to implement AI solutions. We conclude by anticipating future directions for AI in breast cancer care. Stakeholders in healthcare AI should acknowledge that their enterprise is an ethical, legal and social challenge, not just a technical challenge. Taking these challenges seriously will require broad engagement, imposition of conditions on implementation, and pre-emptive systems of oversight to ensure that development does not run ahead of evaluation and deliberation. Once artificial intelligence becomes institutionalised, it may be difficult to reverse: a proactive role for government, regulators and professional groups will help ensure introduction in robust research contexts, and the development of a sound evidence base regarding real-world effectiveness. Detailed public discussion is required to consider what kind of AI is acceptable rather than simply accepting what is offered, thus optimising outcomes for health systems, professionals, society and those receiving care.
Bowel cancer is a serious health problem in developed countries. Australia, the United Kingdom (UK) and New Zealand (NZ) reviewed the same randomised controlled trial evidence on the benefits and harms of population-based bowel cancer screening. Yet only NZ, with the highest age standardised rate of bowel cancer mortality, decided against introducing a bowel cancer screening programme. This case study of policy making explores the unique resource, ethical, institutional and political environments in which the evidence was considered. It highlights the centrality of context in assessing the relative worth of evidence in policy making and raises questions about the suitability of knowledge utilisation strategies.
Objective: To elicit informed views from Australian women aged 70–74 regarding the acceptability of ceasing to invite women their age to participate in government-funded mammography screening (BreastScreen). Design: Two community juries held in 2017. Setting: Greater Sydney, a metropolis of 4.5 million people in New South Wales, Australia. Participants: 34 women aged 70–74 with no personal history of breast cancer, recruited by random digit dialling and previously randomly recruited list-based samples.
In: Degeling , C , Barratt , A , Aranda , S , Bell , R , Doust , J , Houssami , N , Hersch , J , Sakowsky , R , Entwistle , V & Carter , S M 2018 , ' Should women aged 70-74 be invited to participate in screening mammography? A report on two Australian community juries ' , BMJ Open , vol. 8 , no. 6 , e021174 . https://doi.org/10.1136/bmjopen-2017-021174
Objective To elicit informed views from Australian women aged 70-74 regarding the acceptability of ceasing to invite women their age to participate in government-funded mammography screening (BreastScreen). Design Two community juries held in 2017. Setting Greater Sydney, a metropolis of 4.5 million people in New South Wales, Australia. Participants 34 women aged 70-74 with no personal history of breast cancer, recruited by random digit dialling and previously randomly recruited list-based samples. Main outcomes and measures Jury verdict and rationale in response to structured questions. We transcribed audio-recorded jury proceedings and identified central reasons for the jury's decision. Results The women's average age was 71.5 years. Participants were of diverse sociocultural backgrounds, with the sample designed to include women of lower levels of educational attainment. Both juries concluded by majority verdict (16-2 and 10-6) that BreastScreen should continue to send invitations and promote screening to their age group. Reasons given for the majority position include: (1) sending the invitations shows that society still cares about older women, empowers them to access preventive health services and recognises increasing and varied life expectancy; (2) screening provides women with information that enables choice and (3) if experts cannot agree, the conservative approach is to maintain the status quo until the evidence is clear. Reasons for the minority position were the potential for harms through overdiagnosis and misallocation of scarce health resources. Conclusions Preventive programmes such as mammography screening are likely to have significant symbolic value once they are socially embedded. Arguments for programme de-implementation emphasising declining benefit because of limited life expectancy and the risks of overdiagnosis seem unlikely to resonate with healthy older women. In situations where there is no consensus among experts on the value of established screening programmes, people may strongly ...
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. ; Background Opportunities for community members to actively participate in policy development are increasing. Community/citizen's juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer-reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection and potentially repeat a process. We aimed to identify important elements for reporting CJs, to develop an initial checklist and to review published health and health policy CJs to examine reporting standards. Design Using the literature and expertise from CJ researchers and policy advisors, a list of important CJ reporting items was suggested and further refined. We then reviewed published CJs within the health literature and used the checklist to assess the comprehensiveness of reporting. Results CJCheck was developed and examined reporting of CJ planning, juror information, procedures and scheduling. We screened 1711 studies and extracted data from 38. No studies fully reported the checklist items. The item most consistently reported was juror numbers (92%, 35/38), while least reported was the availability of expert presentations (5%, 2/38). Recruitment strategies were described in 66% of studies (25/38); however, the frequency and timing of deliberations was inadequately described (29%, 11/38). Conclusions Currently CJ publications in health and health policy literature are inadequately reported, hampering their use in policy making. We propose broadening the CJCheck by creating a reporting standards template in collaboration with international CJ researchers, policy advisors and consumer representatives to ensure standardized, systematic and transparent reporting.
Background: Opportunities for community members to actively participate in policy development is increasing. Community/Citizen's Juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer-reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection, and potentially repeat a process. We aimed to identify important elements for reporting CJs and develop an initial checklist, and to review published health and health policy CJs to examine reporting standards. Design: Using literature and expertise from CJ researchers and policy-advisors, a list of important CJ reporting items was suggested and further refined. We then reviewed published CJs within the health literature and used the checklist to assess the comprehensiveness of reporting. Results: CJCheck was developed and examined reporting of CJ planning, juror information, procedures and scheduling. We screened 1711 studies and extracted data from 38. No studies fully reported the checklist items. The item most consistently reported was juror numbers (92%, 35/38) while least reported was availability of expert presentations (5%, 2/38). Recruitment strategies were described in 66% of studies (25/38) however, the frequency and timing of deliberations was inadequately described (29%, 11/38). Conclusions: Currently CJ publications in health and health policy literature are inadequately reported, hampering their use in policy-making. We propose broadening the CJCheck by creating a reporting standards template in collaboration with international CJ researchers, policy-advisors and consumer representatives to ensure standardised, systematic and transparent reporting.
BACKGROUND: Opportunities for community members to actively participate in policy development are increasing. Community/citizen's juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer-reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection and potentially repeat a process. We aimed to identify important elements for reporting CJs, to develop an initial checklist and to review published health and health policy CJs to examine reporting standards. DESIGN: Using the literature and expertise from CJ researchers and policy advisors, a list of important CJ reporting items was suggested and further refined. We then reviewed published CJs within the health literature and used the checklist to assess the comprehensiveness of reporting. RESULTS: CJCheck was developed and examined reporting of CJ planning, juror information, procedures and scheduling. We screened 1711 studies and extracted data from 38. No studies fully reported the checklist items. The item most consistently reported was juror numbers (92%, 35/38), while least reported was the availability of expert presentations (5%, 2/38). Recruitment strategies were described in 66% of studies (25/38); however, the frequency and timing of deliberations was inadequately described (29%, 11/38). CONCLUSIONS: Currently CJ publications in health and health policy literature are inadequately reported, hampering their use in policy making. We propose broadening the CJCheck by creating a reporting standards template in collaboration with international CJ researchers, policy advisors and consumer representatives to ensure standardized, systematic and transparent reporting.
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: making pathogen WGS and linked administrative data available for public health research; using 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, ...
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 research - using 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 ...
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.