World Health Organization 12 September, 2018 WHO Training Manual Ethics in epidemics, emergencies and disasters: Research, surveillance and patient care Learning Objective 4.1 Identify potential harm and benefit to individuals and communities resulting from conducting research in emergencies L.O. XX Title

Outline Introduction Small group discussion - potential harms and benefits to individuals and communities Presentation - ethical concepts Small group discussion - values Case studies Discussion and summary Suggested time 0-15 (15 min) 16-25 (10 min) 26-35 36-50 (15 min) 51-60 Activity Introduction Slide presentation and class discussion Small group discussion Case study and discussion Summary and conclusion L.O. XX Title

Potential benefits and harms In small groups discuss: Potential harms of conducting research in public health emergencies to: Individuals Communities Potential benefits of conducting research in public health emergencies to:

Videos The Influenza Pandemic of 1918 http://www.youtube.com/watch?v=rbYwNOcKqqc (2min 37sec) Pandemic 1918 (by high school students) http://www.youtube.com/watch?v=5ftqWGaFVXg (3min 10sec)

Ethical concepts Autonomy – respect for individuals and their liberties Concern for welfare – patients, participants, populations Equity – fair access to health resources Efficiency – use of resources to maximize desired outcome and minimize waste Fair process – inclusive, accountable and informed decision process L.O. XX Title

Ethical concepts Global justice – fair and responsible practices between communities Reciprocity – relationship of corresponding mutual action Social justice – fair and responsible practices Solidarity – mutual global fellowship Transparency – honest and accessible information

Ethical concepts Discuss: Do you think the list discussed is complete? Should some principles/concepts be removed? What should happen if two or more of these principles/concepts conflict?

Small groups: Values In groups discuss what different values are at play: Group 1: “Public health activities [must] of necessity be directed at enhancing the health of whole populations. This goal may conflict with the desire to always place the rights and needs of individuals above those of society.” (Benatar 2006) Group 2: “…ethics of the next century will increasingly recognize that some patient benefits must be sacrificed to fulfill duties to others – either the duty to serve the interests of others or other duties such as keeping promises, telling the truth, and, particularly, promoting justice.” (Veatch 2000) Group 3: “No physician is justified in placing science or the public welfare first and his obligation to the individual, who is his patient or subject, second. No doctor, however great his capacity or original his ideas, has the right to choose martyrs for science or for the general good.” (Pappworth 1967)

Case studies Case study 1: Meningitis in Nigeria (see also Murray (2007), Boseley & Smith (2010), Médecins sans Frontières (2011), Okonta (2014), and Nyika (undated)) Case study 2: SARS in Toronto (Naylor et al., 2003, Chapter 2)

Case studies discussion Which principles were adhered to (or breached) in this case? Which ones were prioritized? Which ones were compromised? What benefits could be anticipated by researchers during this public health emergency? Who were the individuals likely to most benefit?

Case studies discussion What risks were involved in this research? Who were shouldering the greatest share of these burdens? How could the burden of risks have been minimized (or better managed)?

Summary Social benefits from research in public health emergencies Potential individual benefits from research Need to be balanced against potential harms and risks to individuals and community Breaches of privacy and liberty Risks of fast yet unsafe experimental interventions Moral challenges arise when not possible to prioritize some principles without compromising others

Sources Naylor D et al. Learning from SARS: renewal of public health in Canada. (2003). A report of the National Advisory Committee on SARS and Public Health. Health Canada Publications, 1210. http://www.phac-aspc.gc.ca/publicat/sars-sras/naylor/ Shah S. Globalizing Clinical Research. (June 13, 2002). The Nation. http://www.thenation.com/article/globalizing-clinical- research?page=full The Influenza Pandemic of 1918 http://www.youtube.com/watch?v=rbYwNOcKqqc (2min 37sec) Pandemic 1918 (by high school students) http://www.youtube.com/watch?v=5ftqWGaFVXg (3min 10sec)

Chapter author Acknowledgements Schwartz, Lisa, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada L.O. XX Title