Welcome to our PANDORA ethics hub. To foster discussions before, during and after the workshop on ‘Research Ethics during Epidemics’ (for the workshop hub page where you can access recordings of the presentations and slides, click here), we have put together some resources and literature relevant to the five workshop themes outlined below. Please take time to browse through the literature. Feel free to post questions, or initiate conversations with other members in the discussion forum.


Introductory overview

Macklin R & Cowan E (2009) Conducting Research in Disease Outbreaks. PLoS Negl Trop Dis 3(4): e335. https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0000335

Calain P (2018). The Ebola clinical trials: a precedent for research ethics in disasters. J Med Ethics. 2018 44(1):3-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749307/


Research in vulnerable populations

Lange et al. 2013. Vulnerability in Research Ethics: a Way Forward. Bioethics.  https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12032

Mills et al 2005. Designing research in vulnerable populations: lessons from HIV prevention trials that stopped early. BMJ. https://www.bmj.com/content/331/7529/1403.short


Community engagement

Strengthening Engagement through Ethics Review online course https://engage.avac.org/ 

Smout et al.2016 Implementing a novel community engagement system during a clinical trial of a candidate Ebola vaccine within an outbreak setting. Int J Infect Dis https://www.ijidonline.com/article/S1201-9712(16)30423-4/abstract


Consent during epidemics

van der Graaf et al. 2020. The ethics of deferred consent in times of pandemics. https://www.nature.com/articles/s41591-020-0999-9  

de Vries et al. 2020. Research on COVID-19 in South Africa: Guiding principles for informed consent. South African Medical Journal. https://www.researchgate.net/publication/343569779_Research_on_COVID-19_in_South_Africa_Guiding_principles_for_informed_consent

Cook et al. Clinical research ethics for critically ill patients: a pandemic proposal. Crit Care Med. 2010. https://journals.lww.com/ccmjournal/Fulltext/2010/04001/Clinical_research_ethics_for_critically_ill.17.aspx


Biobanking during epidemics

Ashcroft & Macpherson (2019). The complex ethical landscape of biobanking https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(19)30081-7/fulltext

Aminu et al. 2020. How Should Biobanking Be Governed in Low-Resource Settings? AMA Jpurnal of Ethics https://journalofethics.ama-assn.org/sites/journalofethics.ama-assn.org/files/2020-01/msoc2-2002_0.pdf


Ethics review during epidemics

Alirol et al. 2017. Ethics review of studies during public health emergencies - the experience of the WHO ethics review committee during the Ebola virus disease epidemic. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5485606/

Saxena et al. 2019 Ethics preparedness: facilitating ethics review during outbreaks – recommendations from an expert panel. BMC Medical Ethics. https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0366-x

WHO 2020. Guidance for research ethics committees for rapid review of research during public health emergencies. https://apps.who.int/iris/rest/bitstreams/1278864/retrieve