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1. Social value and other ethical issues in research on SARS and STIs Jim Lavery, Ph.D.
Centre for Global Health Research
St. Michaels Hospital, University of Toronto
CDC STI Conf.
Philadelphia, PA
Feb 25, 2004
3. Overview SARS and STI research agenda
Shared challenges for research ethics
Social value of research as critical link between SARS and STI research
4. Global SARS Outbreak 2003 Tested public health capacity and preparedness in countries around the world
Reinforced the global nature of infectious disease and complex requirements of cooperation and governance
Illuminated various gaps in current knowledge
5. SARS Research Agenda Biomedical research (clinical, epi, diagnostic, therapeutic and vaccine)
Social and behavioural research
HSR, policy, governance, ethics
Reflects clear appreciation of social and public significance
6. SARS Research Agenda Research intimately linked to evaluation and improvement of public health practice
7. Ethical Issues The ethics of quarantine
Privacy and confidentiality of personal information and public need to know
HCW duty to care
Collateral damage (other unmet needs)
Risk assessment & communication*
Governance & global issues
8. How does this research agenda compare to the agenda for STIs?
9. STI (PCRS) Research Agenda what works and at what cost?
defining and evaluating new process and outcome measures, including behaviour change
exploring new strategies to improve the uptake and effectiveness of partner notification.
(Fenton & Peterman AIDS 1997)
10. STI Research Agenda Research intimately linked to evaluation and improvement of public health practice
11. Ethical Issues Privacy & confidentiality
Informed consent
Effects on relationships
Medical safety of sex partners
Risk assessment
Risk communication and preparation
14. Research Ethics Focus
Assume unresolved ethical issues in biomedical, S&B research related to SARS and STIs
Focus on a broader challenge for research ethics
15. Research Ethics What research to do and why?
Social value
Respect for subjects & communities
Collaborative partnership* How to do the required research?
Scientific validity
Independent review
Fair subject selection
Favourable R/B assessment
Informed consent
16. Social Value in SARS & STI Research What constitutes social value in SARS & STI research?
In general, research should help to resolve uncertainty related to justification of the relevant public health practices / intervention(s).
High demands of collaborative partnership and respect for subjects and communities
17. Uncertainty and the justification of public heath interventions
18. Public Health Ethics(Upshur REG. Principles for the justification of public health intervention. Canadian Journal of Public Health 2002; 93(2): 101-103) Precautionary principle**
Least restrictive means principle
Harm principle
Reciprocity principle
Transparency principle
19. Pubic Health Ethics Precautionary principle and least restrictive means
Application requires management of uncertainty
Both require evidence for fair application
20. SARS & STI Research Agenda NOT simply scientific agenda, but also of critical importance to the fair exercise of PH authority to restrict civil liberties
Social value of research lies in the ability of the evidence to contribute to this public goal
21. Conclusions SARS and STI research share many practical and ethical challenges
Public health research ethics is emerging as an important area in bioethics
SARS and STIs offer a valuable opportunity to think critically about the social value of public health research and its ethical justifications