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Trusting the Government to Do the Right Thing: Data Ethics in Australia’s Pandemic Response

Published online by Cambridge University Press:  12 December 2022

Sally Dalton-Brown Open the ORCID record for Sally Dalton-Brown [Opens in a new window]
Sally Dalton-Brown*
Affiliation:
University of Melbourne, Melbourne, Australia
*
Email: sallydaltonbrown@hotmail.com
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Abstract

After a brief overview of ethical issues in an Australian context catalyzed by the current pandemic, this article focuses on data protection in the light of recent debates about COVID-19 data tracking in Australia and globally. This article looks at the issue of trust as a fundamental principle of effective and ethical COVID-safe measures undertaken by the government. Key to ensuring such trust are Habermasian participatory dialogs, which assume trust as a condition of authentic illocution, and an emphasis on short-term data capture.

Keywords

COVID-19pandemicdata trackingprivacytrust ethicsend-directed trust
Type
Departments and Columns
Information
Cambridge Quarterly of Healthcare Ethics , Volume 32 , Issue 2 , April 2023 , pp. 222 - 230
Copyright
© The Author(s), 2022. Published by Cambridge University Press

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References

Notes

1. Childress, JF, Faden, FR, Gaare, RD, Gostin, LO, Kahn, J, Bonnie, RJ, Kaas, NE, Mastroianni, AC, Moreno, JD, Nieburg, P. Public health ethics: Mapping the terrain. The Journal of Law, Medicine & Ethics 2002;30(2):170–8CrossRefGoogle ScholarPubMed.

2. Gostin, L, Berkman, B. Pandemic influenza: Ethics, Law, and the public’s health. Administrative Law Review 2007;59 (1):121–75Google Scholar.

3. Pillai S. Australia’s decision to ban its citizens from returning from India—Is it legal? Is it moral? Is it just? ABC News Online 2021 May 7; available at https://www.abc.net.au/religion/is-australias-india-travel-ban-legal-moral-just/13335360 (last accessed 2 June 2021).

4. Soutphommasane T. Criminalising citizens returning from India signals some are more Australian than others. The Guardian 2021 May 4; available at https://www.theguardian.com/commentisfree/2021/may/04/criminalising-citizen-returns-from-india-signals-some-are-more-australian-than-others (last accessed 4 June 2021).

5. Gearin M. People with disabilities facing multiple barriers in Australia’s coronavirus vaccine rollout. ABC News 2021 May 21; available at https://www.abc.net.au/news/2021-05-21/distress-humiliation-for-disabled-in-vaccine-rollout/100153638 (last accessed 4 June 2021).

6. Dawson, A, Isaacs, D, Jansen, M, Jordens, C, Kerridge, I, Kihlbom, U, Kilham, H, Preisz, A, Sheahan, L, Skowronski, G. An ethics framework for making resource allocation decisions within clinical care: Responding to COVID-19. Bioethical Inquiry 2020;17:749–55CrossRefGoogle ScholarPubMed.

7. Ehmann, M. Operational recommendations for scarce resource allocation in a public health crisis. Chest 2020;159(3):1076–83CrossRefGoogle Scholar.

8. Savulescu J, Wilkinson D. Who gets the ventilator in the coronavirus pandemic? These are the ethical approaches to allocating medical care. ABC News 2020 Mar 18; available at https://www.abc.net.au/news/2020-03-18/ethics-of-medical-care-ventilator-in-the-coronavirus-pandemic/12063536 (last accessed 27 May 2021).

9. Ogg K. Is Australia’s travel ban a breach of international human rights law? Lawyers Weekly 2020 Aug 25; available at https://www.lawyersweekly.com.au/sme-law/29277-is-australia-s-travel-ban-a-breach-of-international-human-rights-law (last accessed 6 June 2024).

10. Karp P. Federal court rejects challenge to Australia’s outward travel ban. The Guardian 2021 June 1; available at https://www.theguardian.com/law/2021/jun/01/federal-court-rejects-challenge-to-australias-outbound-travel-ban (last accessed 6 June 2021).

11. Youmshajekian L. COVID-19 vaccine won’t be mandatory. ABC News 2021 Jan 21; available at https://www.abc.net.au/news/2021-01-21/some-industries-may-impose-their-own-mandatory-vaccine-policies/13074628 (last accessed 6 June 2021).

12. State-based ‘No Jab No Play’ policies limit access to childcare services. Health.vic; available at https://www2.health.vic.gov.au/public-health/immunisation/vaccination-children/no-jab-no-play/ (last accessed 6 June 2021).

13. Australian Government Department of Health: Immunisation coverage rates for all children; available at https://www.health.gov.au/health-topics/immunisation/childhood-immunisation-coverage/immunisation-coverage-rates-for-all-children (last accessed 4 June 2021).

14. Bramble, B. Pandemic Ethics: 8 Big Questions of COVID-19. Sydney: Bartleby Books; 2020 Google Scholar.

15. Xafis, V, Schaefer, G, Labude, MK, Zhu, Y, Hsu, LY. The perfect moral storm: Diverse ethical considerations in the COVID-19 pandemic. Asian Bioethics Review 2020;12(2):65–83 CrossRefGoogle ScholarPubMed.

16. National COVID-19 Health and research Advisory Committee Report 2022 May 20; available at https://chf.org.au/sites/default/files/docs/nchrac-report-ethical-issues-arising-from-the-covid-19-pandemic_1.pdf (last accessed 6 June 2021).

17. Schwarz K. The truth about Australian privacy law. LSJ Online 2020 Aug 11; available at https://lsj.com.au/articles/secrets-out-the-truth-about-australian-privacy-law/ (last accessed 4 June 2021).

18. Robinson, K. A false promise of COVID-19 ‘big data’? Health data integrity and the ethics and realities of Australia’s health information management practice. Health Information Management Journal 2021;50(1/2):9–12 CrossRefGoogle ScholarPubMed.

19. Nicol, D. Australian perspectives on the ethical and regulatory considerations for responsible data sharing in response to the covid-19 pandemic. Journal of Law and Medicine 2021;27(829):1–8 Google Scholar; Gostin, L, Lee, L. Ethical collection, storage and use of public health data. JAMA 2009;302(1):82–3Google Scholar; Schreibner, J, Ienca, M, Kechagia, S, Troncoso-Pastoriza, JR, Raisaro, JL, Hubaux, JP, Fellay, J, Vayena, E. Data protection and ethics requirements for multisite research with health data: A comparative examination of legislative governance frameworks and the role of data protection technologies. Journal of Law and the Biosciences 2020;7(1)1–30 Google Scholar.

20. Dulhanty A. Present value of future health data: Ethics of data collection and use. Bulletin of the WHO 2020 Dec 15; available at https://www.who.int/bulletin/volumes/99/2/19–237248/en/ (last accessed 1 June 2021).

21. Woodley M. Government to push ahead with mandatory vaccination reporting bill. newsGP 2020 Dec 4; available at https://www1.racgp.org.au/newsgp/professional/government-to-push-ahead-with-mandatory-vaccinatio (last accessed June 2021); Gur-Arie R, Jamrozik E, Kingori P. No jab, No job? Ethical issues in mandatory COVID-19 vaccination of healthcare personnel. BMJ Global Health 2021;6:e004877. On February 4, 2021, the Australian Parliament passed the Australian Immunisation Register Amendment (Reporting) Bill 2021, amending the previous Act (2015) to require vaccination providers to report information in relation to certain vaccinations and introduce penalties for non-reporting by GPs.

22. Knaus C. More than 2.5 million people have opted out of My Health record, The Guardian 2019 Feb 20; available at https://www.theguardian.com/australia-news/2019/feb/20/more-than-25-million-people-have-opted-out-of-my-health-record (last accessed 7 June 2021).

23. Liotta M. New laws make vaccination reporting mandatory. newsGP 2021 Feb 5; available at https://www1.racgp.org.au/newsgp/professional/new-laws-make-vaccination-reporting-mandatory (last accessed 2 June 2021).

24. Lodders, A, Paterson, JM. Scrutinising COVIDSafe: Frameworks for evaluating digital contact tracing technologies. Alternative Law Journal 2020,45(3):153–61CrossRefGoogle Scholar.

25. The National COVID-19 Privacy Team is a cross-agency working group convened in June 2020 to develop COVIDSafe guidance and referrals from the OAIC, Health, Attorney-General’s Department, Australian Federal Police, Department of Home Affairs, Fair Work Ombudsman and the Inspector-General of Intelligence and Security; available at https://www.oaic.gov.au/privacy/guidance-and-advice/guide-to-undertaking-privacy-impact-assessments/ (last accessed 26 May 2021).

26. Hitch G. Coronavirus tracing app COVIDSafe now fully functional, Deputy Chief Medical Officer confirms. ABC News Online 2020 May 13; available at https://www.abc.net.au/news/2020-05-13/coronavirus-tracing-app-covidsafe-now-fully-functional/12244616 (last accessed 22 May 2021).

27. Meixner S. How many people have downloaded the COVIDsafe app and how central has it been to Australia’s coronavirus response?. ABC News 2020 June 2; available at https://www.abc.net.au/news/2020-06-02/coronavirus-covid19-covidsafe-app-how-many-downloads-greg-hunt/12295130 (last accessed 2 June 2021).

28. Lane A. Privacy fears as governments use phone data to track coronavirus rule-breakers. The New Daily 2020 Apr 6; available at https://thenewdaily.com.au/life/tech/2020/04/06/coronavirus-phone-location-tracking-data/ (last accessed 4 June 2021); Garret P, White JP, Lewandowsky S, Kashima Y, Perfors A, Little DR, Geard N, Mitchell L, Tomko M, Dennis S. The acceptability and uptake of smartphone tracking for COVID-19 in Australia. PLOS One 2021 Jan 22; available at https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0244827 (last accessed 4 June 2021).

29. 2020 Australian Community Attitudes to Privacy Survey; available at https://www.oaic.gov.au/engage-with-us/research/australian-community-attitudes-to-privacy-survey-2020-landing-page/2020-australian-community-attitudes-to-privacy-survey/ (last accessed 4 June 2021).

30. Meade A. Australian coronavirus contact tracing app voluntary and with ‘no hidden agenda’, minister says. The Guardian 2020 Apr 18; available at https://www.theguardian.com/technology/2020/apr/18/australian-coronavirus-contact-tracing-app-voluntary-and-with-no-hidden-agenda-minister-says (last accessed 2 June 2021); Findlay S, Palma R, Milne S. Coronavirus contact-tracing apps struggle to make an impact. Financial Times 2020 May 18; available at https://www.ft.com/content/21e438a6-32f2-43b9-b843-61b819a427aa (last accessed 2 June 2021); Chan, EY, Saqib, NU. Privacy concerns can explain unwillingness to download and use contact tracing apps when COVID-19 concerns are high. Computers in Human Behavior 2021;119:1–12 CrossRefGoogle ScholarPubMed.

31. COVIDsafe legislation; available at: https://www.ag.gov.au/rights-and-protections/privacy/covidsafe-legislation (last accessed 4 June 2021).

32. Review of the Privacy Act 1988; available at https://www.ag.gov.au/integrity/consultations/review-privacy-act-1988#:~:text=On%2012%20December%202019%2C%20the,best%20serve%20the%20Australian%20economy (last accessed 4 June 2021).

33. Australian Privacy Principles quick reference; available at https://www.oaic.gov.au/privacy/australian-privacy-principles/australian-privacy-principles-quick-reference/ (last accessed 7 June 2021).

34. Alazav, M, Hong, SY, Ng, J. Louder bark with no bite: Privacy protection through the regulation of mandatory data breach notification in Australia. Future Generation Computer Systems 2021;116:22–9CrossRefGoogle Scholar.

35. Pagliari, C. The ethics and value of contact tracing apps: International insights and implications for Scotland’s COVID-19 response. Journal of Global Health 2020;10(2):020103CrossRefGoogle ScholarPubMed.

36. Klar, R, Lanzerath, D. The ethics of COVID-19 tracking apps – Challenges and voluntariness. Research Ethics 2020;16(3–4):1–9 CrossRefGoogle Scholar.

37. New Fine for Businesses Flouting QR Code Requirements; available at https://www.premier.vic.gov.au/new-fine-businesses-flouting-qr-code-requirements (last accessed 4 June 2021).

38. Taylor J. Victoria makes covid check-in mandatory at shops after transmissions from ‘fleeting visits’. The Guardian 2021 June 2; available at https://www.theguardian.com/australia-news/2021/jun/02/victoria-makes-covid-check-in-mandatory-at-shops-after-transmissions-from-fleeting-visits (last accessed 4 June 2021).

39. Coronavirus: Israeli court bans lawless contact tracing. BBC News Online 2020 Apr 27; available at https://www.bbc.com/news/technology-52439145 (last accessed 24 May 2021).

40. Bell, J, Aidinlis, S, Smith, H, Mourby, M, Gowans, H, Wallace, S, Kaye, J. Balancing data subjects’ rights and public interest research: Examining the interplay between UK Law, EU human rights law and the GDPR. European Data Protection Law Review 2019;5:43–53 CrossRefGoogle Scholar.

41. Data Privacy, Ethics and Protection: Guidance Note on Big Data for Achievement of the 2030 Agenda. UN Sustainable Development Group 2017 Nov; available at https://unsdg.un.org/resources/data-privacy-ethics-and-protection-guidance-note-big-data-achievement-2030-agenda (last accessed 2 June 2021).

42. Lucivero, F, Hallowell, N, Johnson, S, Prainsack, B, Samuel, G, Sharon, T. COVID-19 and contact tracing apps: Ethical challenges for a social experiment on a global scale. Journal of Bioethical Inquiry 2020;17(4):835–9CrossRefGoogle ScholarPubMed.

43. See note 15, Xafis V, Schaefer G, Labude MK, Zhu Y, Hsu LY. 2020.

44. Goldberg I, Hill A, Shostack A. Trust, ethics and privacy. Boston University Law Review 2001;81(2):101–15 argue that ‘reliance; is a more useful term than trust as it implies a rational process of validating the choice to trust against an institution or country’s track record’.

45. Horsburgh, H. The ethics of trust. The Philosophical Quarterly, 1960;10(41):343–54CrossRefGoogle Scholar.

46. Myskja, B. The categorical imperative and the ethics of trust. Ethics and Information Technology 2008;10:213–20CrossRefGoogle Scholar.

47. Moor, J. The ethics of privacy protection. Library Trends 1990;39(1):69–81 Google Scholar.

48. Childress, J, Bernheim, RG. Public health ethics. Public justification and trust. Bundesgesundheitsbl - Gesundheitsforsch - Gesundheitsschutz 2008;51:158–63CrossRefGoogle ScholarPubMed.

49. Levine, S. Truth and moral validity: On Habermas’ domesticated pragmatism. Constellations: An International Journal of Critical & Democratic Theory 2011;18(2):244–59CrossRefGoogle Scholar.

50. Habermas, J. Moral Consciousness and Communicative Action. Cambridge, MA: MIT Press; 1990:136 Google Scholar.

51. Devine, D, Gaskell, J, Jennings, W, Stoker, G. Trust and the coronavirus pandemic: What are the consequences of and for trust? Political Studies Review 2020;19(2):274–85CrossRefGoogle Scholar.

52. Australia’s consumer health fora held in 2020 resulted in a report presented to the Health Minister; it is unclear whether this has had any policy outcomes as yet. Consumer Commission Final Report—Making Health Better; available at https://chf.org.au/consumer-commission-beyond-covid-19-0 (last accessed 6 June 2021).