Ethics and Epidemics:
Are lessons ever learned?
Global Forum on Bioethics in Research
Fondation Merieux
Annecy, November 3-4 2015
Ross E.G. Upshur, BA (Hons.), MA, MD, MSc, CCFP, FRCPC
Head, Division of Clinical Public Health, Dalla Lana School of Public Health
Director, Bridgepoint Collaboratory for Research and Innovation
Professor, Department of Family and Community Medicine and DLSPH
University of Toronto
Plague of Athens
Thucydides
Neither were the physicians at first of any
service, ignorant as they were of the proper
way to treat it, but they died themselves the
most thickly, as they visited the sick most
often; nor did any human art succeed any
better. Supplications in the temples,
divinations, and so forth were found equally
futile, till the overwhelming nature of the
disaster at last put a stop to them altogether.
3
8
9
10
11
12
Ebola
Lessons Learned?
Lessons Learned
• Comprehensive search of documents
regarding EVD outbreak
• Only one of the documents explicitly
identified an ethical issue
• None of the documents framed any
lesson as having an explicit ethical
nature, or affirmed that lessons learned
are based on normative considerations.
Learning from Ebola 1
• Standard research ethics norms/guidance
apply, emergency situation does not require
them being abandoned
• However it does require reflection and
adaptation to the context.
• More attention to knowledge translation
Learning from Ebola 2
• Ethics review process did not result in undue
delay
• WHO decision to fast track research Aug 11th
2014
• First patient enrolled Dec 27th
• Huge surge in protocols, severe time
constraints, strain on local capacity
• Need for creative solutions and investment in
capacity building
Key Ethical Issues
• Monitored Emergency Use vs Compassionate
Use
• Appropriate Study Methodology in Outbreaks
• Harmonization of Multiple Reviews
• Biological Samples, Biobanks and Consent
• Inclusion of pregnant women and children in
clinical trials
• Companion anthropological studies
Key Concepts
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•
•
•
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Community Engagement
Trust
Reciprocity
Solidarity
Equity
Critical Questions
• What is the purpose of engaging in research
during a Public Health Emergency?
• What questions are being answered?
• How are differing institutional and
organizational missions best navigated in the
context of research?
FDA Mission
• FDA is responsible for protecting the public
health by assuring the safety, efficacy and
security of human and veterinary drugs,
biological products, medical devices, our
nation’s food supply, cosmetics, and products
that emit radiation.
NIH Mission
• NIH’s mission is to seek fundamental
knowledge about the nature and behavior of
living systems and the application of that
knowledge to enhance health, lengthen life,
and reduce illness and disability.
MSF Charter
• Médecins Sans Frontières provides assistance
to populations in distress, to victims of
natural or man-made disasters and to victims
of armed conflict. They do so irrespective of
race, religion, creed or political convictions.
Sergei Korsakoff
• Those who do not
remember the
past are
condemned to
repeat it.
Jonathan Lear
Radical Hope
• In the face of a cultural challenge…there is
ever more pressure to explain things in the
traditional ways, yet there is an inchoate
sense that the old ways of explaining are
leaving things unsaid. And yet one does not
yet have the concepts with which to say it.