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Ethics and Pandemic Preparedness: Engaging the Voices of the Public PDF Print E-mail

The goal of the project is to enhance the legitimacy of the ethical framework for pandemic influenza planning with a view to improving its policy impact. There are two objectives:

    1. To elucidate the normative basis of ethical framework for pandemic influenza planning outlined in the Joint Centre for Bioethics' (JCB) report “Stand on Guard for Thee”.

    2. To solicit public perspectives on the four ethical challenges identified in the JCB report (i.e., health workers’ duty to care; restrictive measures to protect the public good; priority setting and allocation of scarce resources; and global governance implications) and to refine the ethical framework in light of these findings.

This program of research will achieve these goals by utilizing conceptual scholarship, innovative public engagement technologies and traditional survey methods. The study team is well versed in the ethical issues of pandemic planning, productive and skilled at a variety of research methodologies. The outcomes will be of interest to public health policy makers at the federal, provincial and municipal levels and will help inform pandemic planning efforts internationally.

Background

The prospect of a pandemic influenza presents significant ethical challenges for policymakers, clinicians, and the public in Canada and elsewhere. How should decisions be made, as to who has priority access to scarce resources, such as vaccines, antivirals, or ventilated hospital beds? When are public health orders to restrict movement (e.g., quarantine) legitimate? Are health care workers duty-bound to care for the ill? Even when they may be at increased risk of harm or have competing familial obligations? Do developed countries, like Canada, have an obligation to assist developing countries in the event of a pandemic influenza crisis? Organisations, agencies, and policymakers in international, national, regional, and local governments are designing plans to respond to a potential outbreak of pandemic influenza in their respective communities and jurisdictions. Clinical protocols are being developed by clinicians and clinical researchers to identify scientific research priorities and needs related to an anticipated pandemic. Until now, the bioethics community has been slow to respond to the ethical challenges of public health in general and to pandemic influenza planning in particular. Furthermore, public engagement on these issues has been limited.

In response to these challenges, the JCB released a report in November 2005 entitled: Stand on Guard for Thee: Ethical Considerations in Preparedness Planning for Pandemic Influenza. This report, informed by CIHR funded research on the ethical implications of the SARS outbreak, outlined a framework of values for inclusion in pandemic plans. Their application was illustrated by four key ethical challenges in pandemic planning: health care workers’ duty to care; institutions’ reciprocal obligations to health care workers; fair resource allocation; and the legitimacy of the use of restrictive measures for disease control and issues in global governance. The framework proposed in the SARS analysis was modified by virtue of the research results and applied to pandemic influenza. The resulting ethical framework is an analytic tool consisting of 10 substantive and 5 procedural values to guide planning efforts. This framework has been integrated into pandemic plans in Canada, been presented internationally, received considerable press coverage, and informed a World Health Organization consultation on ethical issues of pandemic planning.

The framework, though, is by no means a complete or final entity, but is best regarded as a work in progress. Despite extensive dissemination and uptake of this framework, there remain gaps in understanding certain facets of it. First, the framework itself was derived by expert consensus and reflection. Secondly, how the values identified are ultimately justified or justifiable has not yet been entirely explored from the perspective of ethical theory. Thirdly, it is unknown to what extent the proposed values identified in the framework is endorsed by the Canadian public.

The JCB ethical framework has undergone extensive vetting within the health care sector. It has been vetted by hospital staff and administrators; government officials in public health and long term care; the hospital voluntary sector; and even international government health agencies. Although we have widely solicited and incorporated feedback on the framework in the health sector, we have yet to test how the ethical framework resonates with the broader Canadian public - most especially those marginalized groups (e.g., aboriginals, the homeless, etc) and vulnerable populations (e.g., the elderly, immunocompromised individuals) who will be differentially impacted by an influenza pandemic. We view this as an essential step in the process of ethically justifying the framework. If the framework does not reflect the interests and values of the Canadian public, its utility to the policymakers and pandemic planners who seek to protect the interests and well-being of that same public will be diminished. The framework cannot be without the moral legitimacy that is derived from consultation with the public.

Public engagement adds enormous value to health policy development. The public can play the role of “value consultants”, by helping to define policy issues, and make value judgments related to the social and normative aspects of scientific or technical issues. Research demonstrates that the public can make coherent and sophisticated recommendations about regulatory issues pertaining to health and can provide invaluable ‘local knowledge’ relevant to the policymaking process. Public engagement enhances accountability, especially in government decision-making and has been argued extensively to improve the legitimacy of decisions taken. Finally, public engagement, especially deliberative methods, helps to build consensus and resolve moral conflict in a pluralistic society, by creating shared decision-making on key policy issues, including bioethics debates.

Broader objectives for public consultation include: “stimulating debate, improving public understanding of complex health care issues, and the desire to achieve consensus around public and community values”. Public consultations, especially cogitative methods, are a way of managing moral conflict in a pluralistic society. Gutmann and Thompson argue that the most promising fora for bioethical debates are deliberative and democratic.

The perspectives of the broader public on the ethical issues identified in the report have not yet been ascertained. The goal of this research program is twofold: to explore the ethical foundations and justification of the framework; and to examine the extent to which the JCB framework is concordant with the views of the public. Additionally, within the areas identified by the report, this project will solicit the views of the public regarding health care workers’ duty to care; priority lists for scarce resources, such as antiviral medication and vaccines; and the use of restrictive measures for disease control. This program of research will achieve these goals by utilizing innovative public engagement technologies, conceptual scholarship, traditional survey and qualitative methods.

Methods

This study employs three methods to achieve its objectives: interdisciplinary conceptual analysis, national survey, and town hall meetings.
  • Interdisciplinary Conceptual Analysis (Objective 1): Interdisciplinary conceptual analysis is used to examine systematically the normative basis of each of the 10 substantive values identified in the ethical framework. This involves an extensive literature review in philosophy, bioethics and public health, as well as an initial framing of the issues, tensions and dimensions of each value as related to the practical aspects of pandemic influenza planning. The expected outcome is a series of 10 concept papers (one per substantive value) about 15-20 pages in length, published either as a journal series or a scholarly monograph, which could be the basis for shorter policy briefs targeted towards decision-maker and public audiences.

  • National Public Opinion Survey (Objective 2): In the first year of the grant, a national telephone survey will be conducted of a random sample of Canadians. Consenting respondents will be asked to provide answers to 20 questions relating to the four identified domains and provide demographic information. We will follow the methodology used by Ritvo et al. in a national survey of vaccine knowledge and attitudes. In this study, we will assess N = 2000 subjects to better ensure an accurate characterization of national attitudes. The sample will be stratified by gender (50% male and 50% female); age (18-35 / 35-65 / 65+); residence (rural vs urban); and province -- to best reflect the national population. Within these constraints, Random Digit Dialing (RDD) will be used to obtain a random population within each target strata. Demographic data will be collected, but no linkage to personal identifying information will be retained. The questions will be Likert scaled, seeking respondent’s agreement or disagreement with statements eliciting ethical perspectives. It is estimated that 2000 respondents will provide sufficient power to discern differences between age, gender or geographical questions. The survey instrument will be pre-tested for clarity and face validity.
  • Town Hall Meeting (Objective 2): The Joint Centre for Bioethics has a cutting-edge technological platform for public engagement that allows for face-to-face and virtual engagement activities that is unique in Canada. In the second year, this platform will be utilized to conduct a 21st Century Town Hall meeting to be held at six locations across Canada (Atlantic Canada, Quebec, Ontario, Prairies, British Columbia, and Nunavit) and facilitated remotely by the Joint Centre for Bioethics. The Town Hall meeting will be a day-long event and that will focus on each of the four challenges of the preparedness planning framework identified in Stand on Guard for Thee as well as on the consonance of the ethical framework itself with public and community values across Canada. Each meeting, which will involve 50-70 people on-site with others participating virtually, will be preceded by an information dissemination strategy. A review of that background information will begin each meeting itself, followed by structured surveys and semi-structured small-group discussions conducted to be archived for evaluation and research purposes. Reports will then be sent to all participants and archived on the JCB's website. The data will be analyzed by coding strategies recognized in qualitative research, and the findings will be used as a basis for planning more comprehensive national public engagement exercises. A pilot town hall was held at the Joint Centre for Bioethics on September 27, 2006 on the issue of priority setting for vaccines in a pandemic. It was attended by over 50 people, and the technology performed well, and feedback from participants was extremely positive.

Research Outcomes

The outcomes of this program of research will contribute to understanding the ethical basis of pandemic planning and inform health policy at the federal, provincial and municipal levels, contributing to pandemic planning efforts internationally. It will link directly to the CIHR Request for Applications (RFA) stated objectives of addressing scientific questions and problems related to influenza for pandemic preparedness -- including, social and ethical issues; addressing knowledge translation questions and problems related to pandemic outbreaks, such as risk communications and infection control, and will further enhance and increase Canada's preparedness and research response capacity from an ethical perspective. The program of research directly addresses the relevant research areas of public health and health care preparedness and surge capacity, optimal use of antiviral drugs and vaccines and preparation for a pandemic.

 
JCBUniversity of Toronto Joint Centre for Bioethics
88 College Street
Toronto, ON  M5G 1L4
CANADA
Funded by the
Canadian Institutes of Health Research