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
