Facing the Ethical Challenges: Consumer Involvement in COVID-19 Pandemic Research

N Straiton¹, A McKenzie², J Bowden³, A Nichol^{4

5}, R Murphy⁶, T Snelling⁷, J Zalcberg⁸, J Clements⁹, J Stubbs⁹, A Economides¹⁰, D Kent⁹, J Ansell¹¹, T Symons⁹

Affiliations

¹ Australian Clinical Trials Alliance, Suite 1, Level 2, 24 Albert Road, Melbourne, VIC, 3205, Australia. nicola_straiton@hotmail.com.
² Telethon Kids Institute, Consumer Engagement, Perth, Australia.
³ AccessCR, Sydney, Australia.
⁴ Monash University, Melbourne, Australia.
⁵ St. Vincent's University Hospital, Dublin, Ireland.
⁶ University of Auckland, Auckland, New Zealand.
⁷ University of Sydney, Faculty of Medicine and Health, Sydney, Australia.
⁸ Monash University, Cancer Research, Melbourne, Australia.
⁹ Australian Clinical Trials Alliance, Consumer Engagement, Melbourne, Australia.
¹⁰ Brain and Mind Centre, University of Sydney, Sydney, Australia.
¹¹ Consumers Health Forum, Canberra, Australia.

PMID: 33169265
PMCID: PMC7651817
DOI: 10.1007/s11673-020-10060-5

Facing the Ethical Challenges: Consumer Involvement in COVID-19 Pandemic Research

N Straiton et al. J Bioeth Inq. 2020 Dec.

. 2020 Dec;17(4):743-748.

doi: 10.1007/s11673-020-10060-5. Epub 2020 Nov 9.

Authors

N Straiton¹, A McKenzie², J Bowden³, A Nichol^{4

5}, R Murphy⁶, T Snelling⁷, J Zalcberg⁸, J Clements⁹, J Stubbs⁹, A Economides¹⁰, D Kent⁹, J Ansell¹¹, T Symons⁹

Affiliations

¹ Australian Clinical Trials Alliance, Suite 1, Level 2, 24 Albert Road, Melbourne, VIC, 3205, Australia. nicola_straiton@hotmail.com.
² Telethon Kids Institute, Consumer Engagement, Perth, Australia.
³ AccessCR, Sydney, Australia.
⁴ Monash University, Melbourne, Australia.
⁵ St. Vincent's University Hospital, Dublin, Ireland.
⁶ University of Auckland, Auckland, New Zealand.
⁷ University of Sydney, Faculty of Medicine and Health, Sydney, Australia.
⁸ Monash University, Cancer Research, Melbourne, Australia.
⁹ Australian Clinical Trials Alliance, Consumer Engagement, Melbourne, Australia.
¹⁰ Brain and Mind Centre, University of Sydney, Sydney, Australia.
¹¹ Consumers Health Forum, Canberra, Australia.

PMID: 33169265
PMCID: PMC7651817
DOI: 10.1007/s11673-020-10060-5

Abstract

Consumer involvement in clinical research is an essential component of a comprehensive response during emergent health challenges. During the COVID-19 pandemic, the moderation of research policies and regulation to facilitate research may raise ethical issues. Meaningful, diverse consumer involvement can help to identify practical approaches to prioritize, design, and conduct rapidly developed clinical research amid current events. Consumer involvement might also elucidate the acceptability of flexible ethics review approaches that aim to protect participants whilst being sensitive to the challenging context in which research is taking place. This article describes the main ethical challenges arising from pandemic research and how involving consumers and the community could enable resolution of such issues.

Keywords: Community; Consumer; Ethics; Involvement; Pandemic; Research.

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References

1. Australian Health Research Alliance. 2018. Consumer and community involvement in health and medical research: An Australia-wide audit 2018. https://www.slhd.nsw.gov.au/sydneyhealthpartners/pdf/AHRA_CCI_Final_Repo.... Accessed May 1, 2020.
1. Bedrosian SR, Young CE, Smith LA, et al. Lessons of risk communication and health promotion—West Africa and United States. Morbidity and Mortality Weekly Report. 2016;65(Suppl 3):68–74. - PubMed
1. Clark LT, Watkins L, Piña M, et al. Increasing diversity in clinical trials: Overcoming critical barriers. Current Problems in Cardiology. 2018;44(5):148–172. doi: 10.1016/j.cpcardiol.2018.11.002. - DOI - PubMed
1. Clinical Trials Project Reference Group. 2020. COVID-19: Guidance on clinical trials for institutions, HRECs, researchers and sponsors.https://www.nhmrc.gov.au/sites/default/files/documents/attachments/ctprg.... Accessed May 1, 2020.
1. Crooks K, Casey D, Ward JS. First Nations people leading the way in COVID-19 pandemic planning, response and management. Medical Journal of Australia. 2020;213(4):151–152. doi: 10.5694/mja2.50704. - DOI - PMC - PubMed

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Facing the Ethical Challenges: Consumer Involvement in COVID-19 Pandemic Research

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Facing the Ethical Challenges: Consumer Involvement in COVID-19 Pandemic Research

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