Abstract
Objectives
Recent experiences have demonstrated that restrictive measures remain a useful public health tool during infectious disease outbreaks. However, the use of restrictive measures is not without controversy, as there is no agreed-upon threshold for when and how to invoke restrictive measures. The objectives of this study are to solicit perspectives from Canadians on the ethical considerations of using restrictive measures in response to influenza pandemics, and in turn, to use public views to contribute to a better understanding of what is considered to be the justifiable use of restrictive measures.
Methods
A series of town hall focus groups with Canadian residents from June 2008 to May 2009, in three Canadian regions, in order to achieve broad public engagement (n=3 focus groups with a total of 17 participants).
Results
Two key themes emerged from all town hall focus groups: 1) create an environment for compliance through communication rather than enforcement, and 2) establish the delineation between individual rights, community values, and the greater good.
Conclusion
While there is a need for a decision-making authority and even a mechanism for enforcement, our data suggest that a more tractable approach to restrictive measures is one that enables individuals to voluntarily comply by creating an environment to compel compliance based on communication. This approach requires restrictive measures to be a) proportional to the threat, b) implemented along with reciprocal arrangements provided to those affected, and c) accompanied by open and transparent communication throughout all stages so that citizens can both understand and participate in decision-making.
Key words: Public health, influenza, pandemics, bioethics, qualitative research, quarantine
Résumé
Objectifs
Des expériences récentes ont montré que les mesures restrictives demeurent un outil de santé publique efficace durant les éclosions de maladies infectieuses. Toutefois, le recours à ces mesures est controversé, car il n’y a pas de seuil communément accepté qui indique quand et comment s’en prévaloir. Les objectifs de notre étude étaient de sonder l’opinion des Canadiens sur les considérations éthiques qui soustendent l’emploi de mesures restrictives en réaction aux pandémies d’influenza, et en retour, d’utiliser les résultats de ce sondage pour mieux comprendre ce qui justifie le recours à des mesures restrictives aux yeux du public.
Méthode
Nous avons organisé une série de discussions publiques avec des résidents canadiens entre juin 2008 et mai 2009 dans trois régions du Canada pour obtenir une vaste mobilisation populaire (n=3 groupes de 17 participants en tout).
Résultats
Deux grands thèmes se sont dégagés des discussions publiques; il faudrait: 1) créer un climat de conformité par la communication plutôt que par des mesures coercitives et 2) délimiter les frontières entre les droits individuels, les valeurs collectives et le bien commun.
Conclusion
On aurait besoin d’un pouvoir décisionnel et même d’un mécanisme d’application, mais nos données montrent que l’on peut aborder les mesures restrictives avec plus de doigté en permettant aux gens de se conformer volontairement en créant un climat qui favorise la conformité par la communication. Une telle approche exige que les mesures restrictives soient a) proportionnelles à la menace, b) appliquées en même temps que des accords de réciprocité avec les personnes touchées et c) accompagnées par des communications ouvertes et transparentes à chaque étape pour que les citoyens puissent à la fois comprendre les décisions et participer au processus décisionnel.
Mots clés: santé, publique, grippe humaine, pandémies, bioéthique, recherche qualitative, quarantaine
Footnotes
Acknowledgements: This project was financially supported by the Canadian Institutes of Health Research Pandemic Planning Strategic Research Initiative. Mr. Smith is supported by a CIHR Frederick Banting and Charles Best Canada Graduate Scholarship. Dr. Upshur is supported by the Canada Research Chair in Primary Care Research. The authors thank the participants of the Vancouver, Winnipeg, and Saint John town hall meetings, as well as those who collaborated with, and who are team members of, the Canadian Program of Research on Ethics in Pandemic (CanPREP).
Conflict of Interest: None to declare.
References
- 1.Svoboda T, Henry B, Shulman L, Kennedy E, Rea E, Wallington T, et al. Public health measures to control the spread of the severe acute respiratory syndrome during the outbreak in Toronto. N Engl J Med. 2004;350(23):2352–61. doi: 10.1056/NEJMoa032111. [DOI] [PubMed] [Google Scholar]
- 2.Bell DM. World Health Organization Working Group on Prevention of International and Community Transmission of SARS. Public health interventions and SARS spread, 2003. Emerg Infect Dis. 2004;10(11):1900–6. doi: 10.3201/eid1011.040729. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Wu JT, Riley S, Fraser C, Leung GM. Reducing the impact of the next influenza pandemic using household-based public health interventions. PLoS Med. 2006;3(9):1532–40. doi: 10.1371/journal.pmed.0030361. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Viens AM, Bensimon CM, Upshur REG. Your liberty or your life: Reciprocity in the use of restrictive measures in contexts of contagion. J Bioeth Inq. 2009;6(2):207–17. doi: 10.1007/s11673-009-9149-2. [DOI] [Google Scholar]
- 5.Selgelid MJ, McLean AR, Arinaminpathy N, Savulescu J. Infectious disease ethics: Limiting liberty in contexts of contagion. J Bioeth Inq. 2009;6(2):149–52. doi: 10.1007/s11673-009-9166-1. [DOI] [Google Scholar]
- 6.Colizza V, Barrat A, Barthelemy M, Valleron AJ, Vespignani A. Modeling the worldwide spread of pandemic influenza: Baseline case and containment interventions. PLoS Med. 2007;4(1):e13. doi: 10.1371/journal.pmed.0040013. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Cooper BS, Pitman RJ, Edmunds WJ, Gay NJ. Delaying the international spread of pandemic influenza. PLoS Med. 2006;3(6):e212. doi: 10.1371/journal.pmed.0030212. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Tracy CS, Rea E, Upshur REG. Public perceptions of quarantine: communitybased telephone survey following an infectious disease outbreak. BMC Public Health. 2009;9:470. doi: 10.1186/1471-2458-9-470. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Bensimon CM, Upshur REG. Evidence and effectiveness in decision-making for quarantine. Am J Public Health. 2007;97:S44–S48. doi: 10.2105/AJPH.2005.077305. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Bensimon CM. Elsevier Academic Press. 2010. Communicable disease control in the new millennium: A qualitative inquiry on the legitimate use of restrictive measures in an era of rights consciousness. [Google Scholar]
- 11.University of Toronto Joint Centre for Bioethics Pandemic Influenza Working Group. Stand on guard for thee: Ethical considerations in preparedness planning for pandemic influenza. Toronto, ON: University of Toronto Joint Centre for Bioethics; 2005. [Google Scholar]
- 12.Lincoln YS, Guba EG. Naturalistic Inquiry. Newbury Park, CA: Sage Publications; 1985. [Google Scholar]
- 13.Guba EG, Lincoln YS. Competing paradigms in qualitative research. In: Denzin NK, Lincoln YS, editors. Handbook of Qualitative Research. Newbury Park, CA: Sage Publications; 1994. [Google Scholar]
- 14.Cava MA, Fay KE, Beanlands HJ, McCay EA, Wignall R. Risk perception and compliance with quarantine during the SARS outbreak. J Nurs Scholarsh. 2005;37(4):343–47. doi: 10.1111/j.1547-5069.2005.00059.x. [DOI] [PubMed] [Google Scholar]
- 15.Richards EP, Rathbun KC. The legal basis for public health. In: Scutchfield FD, Keck CW, editors. Principles of Public Health Practice. Boston, MA: Delmar Publishers; 1977. [Google Scholar]
- 16.Ries N. Legal foundations of public health in Canada. In: Bailey T, Caulfield T, Ries N, editors. Public Health Law and Policy in Canada. Markham, ON: Lexis-Nexis; 2008. [Google Scholar]
- 17.O’Neill O. Public health or clinical ethics: Thinking beyond borders. Ethics Int Aff. 2002;16(2):35–45. doi: 10.1111/j.1747-7093.2002.tb00395.x. [DOI] [PubMed] [Google Scholar]
- 18.Annas GJ. Bioterrorism, public health, and human rights. Health Aff. 2002;21:94–97. doi: 10.1377/hlthaff.21.6.94. [DOI] [PubMed] [Google Scholar]
- 19.The Center for Lawthe Public’s Health at GeorgetownJohns Hopkins Universities. A Draft Discussion of the Model State Emergency Health Powers Act 2001. Washington, DC: The Center for Law and the Public’s Health at Georgetown and Johns Hopkins Universities; 2001. [Google Scholar]
- 20.Iredale R, Longley M. Public perspectives on the new genetics: The citizens’ jury experiment. In: Thompson A, Chadwick R, editors. Genetic Information: Acquisition, Access and Control. New York, NY: Kluwer Academic/Plenum Publishing Ltd.; 1999. [Google Scholar]
- 21.Kerr A, Cunningham-Burley S, Amos A. The new genetics and health: Mobilizing lay expertise. Public Underst Sci. 1997;7:41–60. doi: 10.1177/096366259800700104. [DOI] [PubMed] [Google Scholar]
- 22.Wynne B. Knowledges in context. Sci Technol Human Values. 1991;16(1):111–21. doi: 10.1177/016224399101600108. [DOI] [Google Scholar]
- 23.Frankish C, Kwan B, Ratner P, Higgins J, Larsen C. Challenges of citizen participation in regional health authorities. Soc Sci Med. 2002;54:1471–80. doi: 10.1016/S0277-9536(01)00135-6. [DOI] [PubMed] [Google Scholar]
- 24.Maloff B, Bilan D, Thurston W. Enhancing public input into decision making: Development of the Calgary Regional Health Authority public participation framework. Fam Community Health. 2000;23(1):668–78. [Google Scholar]
- 25.Daniels N, Sabin J. Limits to health care: Fair procedure, democratic deliberation, and the legitimacy problem for insurers. Philos Public Aff. 1997;26(4):303–50. doi: 10.1111/j.1088-4963.1997.tb00082.x. [DOI] [PubMed] [Google Scholar]
- 26.Beetham D. Liberal democracy and the limits of democratization. Political Studies. 1992;40(S1):47. [Google Scholar]
- 27.Benhabib S. Toward a deliberative model of democratic legitimacy. In: Benhabib S, editor. Democracy and Difference. Princeton, NJ: Princeton University Press; 1996. [Google Scholar]
- 28.Bohman J. Public Deliberation: Pluralism, Complexity and Democracy. Cambridge, MA: MIT Press; 1996. [Google Scholar]
- 29.Cohen J. Deliberation and democratic legitimacy. In: Hamlin A, Pettit P, editors. The Good Policy. Oxford, UK: Bail Blackwell; 1989. [Google Scholar]
- 30.Dryzek J. Discursive Democracy: Politics, Policy and Political Science. Cambridge, MA: Cambridge University Press; 1990. [Google Scholar]