Ethics of public health surveillance: new guidelines

Fairchild, Amy L.; Haghdoost, Ali Akbar; Bayer, Ronald; Selgelid, Michael J.; Dawson, Angus; Saxena, Abha; Reis, Andreas

doi:10.1016/s2468-2667(17)30136-6

Cited by 19 publications

(21 citation statements)

References 2 publications

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“…In most jurisdictions, state-run communicable disease surveillance activities are mandated by public health legislation with no opportunity to ‘opt out’, because of the significant public benefit of full participation. 9 10 As the impacts of COVID-19 grow, reports are highlighting differing levels of public support for and social cooperation with current public health measures in countries with different political traditions such as China, 11 Italy 12 and the USA. 13 However, when there is no immediate disease threat, in a liberal democracy such as Australia, the routine collection and linkage of detailed personal information could be regarded as intrusive and a threat to civil liberties, no matter how great the public health benefits.…”

Section: Introductionmentioning

confidence: 99%

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Changes in public preferences for technologically enhanced surveillance following the COVID-19 pandemic: a discrete choice experiment

et al. 2020

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ObjectivesAs governments attempt to navigate a path out of COVID-19 restrictions, robust evidence is essential to inform requirements for public acceptance of technologically enhanced communicable disease surveillance systems. We examined the value of core surveillance system attributes to the Australian public, before and during the early stages of the current pandemic.DesignA discrete choice experiment was conducted in Australia with a representative group of respondents, before and after the WHO declared COVID-19 a Public Health Emergency of International Concern. We identified and investigated the relative importance of seven attributes associated with technologically enhanced disease surveillance: respect for personal autonomy; privacy/confidentiality; data certainty/confidence; data security; infectious disease mortality prevention; infectious disease morbidity prevention; and attribution of (causal) responsibility. Specifically, we explored how the onset of the COVID-19 outbreak influenced participant responses.Setting and participants2008 Australians (general public) completed the experiment: 793 before COVID-19 outbreak onset (mean age 45.9 years, 50.2% male) and 1215 after onset (mean age 47.2 years, 49% male).ResultsAll seven attributes significantly influenced respondents’ preferences for communicable disease surveillance systems. After onset, participants demonstrated greater preference for a surveillance system that could prevent a higher number of illnesses and deaths, and were less concerned about their personal autonomy. However, they also increased their preference for a system with high data security.ConclusionsPublic acceptance of technology-based communicable disease surveillance is situation dependent. During an epidemic, there is likely to be greater tolerance of technologically enhanced disease surveillance systems that result in restrictions on personal activity if such systems can prevent high morbidity and mortality. However, this acceptance of lower personal autonomy comes with an increased requirement to ensure data security. These findings merit further research as the pandemic unfolds and strategies are put in place that enable individuals and societies to live with SARS-CoV-2 endemicity.

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Section: Introductionmentioning

confidence: 99%

“…13 However, when there is no immediate disease threat, in a liberal democracy such as Australia, the routine collection and linkage of detailed personal information could be regarded as intrusive and a threat to civil liberties, no matter how great the public health benefits. 9 14 …”

Section: Introductionmentioning

confidence: 99%

Changes in public preferences for technologically enhanced surveillance following the COVID-19 pandemic: a discrete choice experiment

et al. 2020

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“…The view that publics need to be educated so that they trust science and its governance is shifting. It is increasingly recognised that in order to establish the trustworthiness of new institutions, publics need to be actively involved in key policy decisions about the nature, content and scope of their activities [37,64]. In their study of the governance of biobanks in Canada, O'Doherty and colleagues [75] identified several necessary conditions and institutional arrangements and qualities that work to establish trustworthy models of governance for new institutions.…”

Section: Discussionmentioning

confidence: 99%

“…The benefits of earlier outbreak detection and response are significant. More expedient and specific interventions can limit the health and socioeconomic impacts of infectious diseases, but surveillance has political, personal and ethical implications [36,37]. Risks include the use of flawed methods (as illustrated by Google Flu Trends®, which proved to have poor reliability) [38][39][40].…”

Section: (Continued From Previous Page)mentioning

confidence: 99%

“…Potential implications of human genome sequencing were outside of the scope of this study. Decisions, about what data should be collected and what action thresholds are used, are not just matters for experts [37]. To secure social licence, these systems must align with community values; this can be facilitated by structured public dialogue to develop ethically and legally defensible justification for their design and operation [6,49].…”

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confidence: 99%

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

et al. 2020

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Background: Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologiespathogen whole genome sequencing (WGS) and Big Data analyticspromise 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:

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Ethical issues in global mental health

Palk

Stein

2020

Global Mental Health and Neuroethics

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Ethics of public health surveillance: new guidelines

Cited by 19 publications

References 2 publications

Changes in public preferences for technologically enhanced surveillance following the COVID-19 pandemic: a discrete choice experiment

Changes in public preferences for technologically enhanced surveillance following the COVID-19 pandemic: a discrete choice experiment

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

Ethical issues in global mental health

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