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

Degeling, Christopher, Carter, Stacy M., van Oijen, Antoine M., McAnulty, Jeremy, Sintchenko, Vitali, Braunack-Mayer, Annette, Yarwood, Trent, Johnson, Jane, and Gilbert, Gwendolyn L. (2020) Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries. BMC Medical Ethics, 21. 31.

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Abstract

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 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.

Item ID: 63194
Item Type: Article (Research - C1)
ISSN: 1472-6939
Keywords: Social licence, Data-linkage, Infectious disease, Pathogenomics, Public health surveillance, Public deliberation
Copyright Information: © The Author(s). 2020. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Funders: National Health and Medical Research Council (NHMRC) of Australia
Projects and Grants: NHMRC grant #1102962, NHMRC grant #1083079
Date Deposited: 20 May 2020 07:34
FoR Codes: 42 HEALTH SCIENCES > 4206 Public health > 420605 Preventative health care @ 100%
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