Pandemic Ethics Research Articles

Pandemic ethics: the case for risky research

There is too much that we do not know about COVID-19. The longer we take to find it out, the more lives will be lost. In this paper, we will defend a principle of risk parity: if it is permissible to expose some members of society (e.g. health workers or the economically vulnerable) to a certain level of ex ante risk in order to minimize overall harm from the virus, then it is permissible to expose fully informed volunteers to a comparable level of risk in the context of promising research into the virus. We apply this principle to three examples of risky research: skipping animal trials for promising treatments, human challenge trials to speed up vaccine development, and low-dose controlled infection or “variolation.” We conclude that if volunteers, fully informed about the risks, are willing to help fight the pandemic by aiding promising research, there are strong moral reasons to gratefully accept their help. To refuse it would implicitly subject others to still graver risks.

Our Next Pandemic Ethics Challenge? Allocating "Normal" Health Care Services.

The pandemic creates unprecedented challenges to society and to health care systems around the world. Like all crises, these provide a unique opportunity to rethink the fundamental limiting assumptions and institutional inertia of our established systems. These inertial assumptions have obscured deeply rooted problems in health care and deflected attempts to address them. As hospitals begin to welcome all patients back, they should resist the temptation to go back to business as usual. Instead, they should retain the more deliberative, explicit, and transparent ways of thinking that have informed the development of crisis standards of care. The key lesson to be learned from those exercises in rational deliberation is that justice must be the ethical foundation of all standards of care. Justice demands that hospitals take a safety-net approach to providing services that prioritizes the most vulnerable segments of society, continue to expand telemedicine in ways that improve access without exacerbating disparities, invest in community-based care, and fully staff hospitals and clinics on nights and weekends.

Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study.

BackgroundStark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity.ObjectiveGiven the intrastate variation in the themes expressed by Maryland participants, the project team sought to examine interstate differences by implementing the same protocol elsewhere to answer the following questions. Does variation in ethical frames of reference exist within different regions of the United States? What practical implications does evidence of sameness and difference possess for pandemic planners and policymakers at local and national levels?MethodsResearch using the same deliberative democracy process from the Maryland study was conducted in Central Texas in March 2018 among 30 diverse participants, half of whom identified as Hispanic or Latino. Deliberative democracy provides a moderated process through which community members can learn facts about a public policy matter from experts and explore their own and others’ views.ResultsParticipants proposed that by evenly distributing supplies of ventilators and applying clear eligibility criteria consistently, health authorities could enable fair allocation of scarce lifesaving equipment. The strong identification, attachment, and obligation of persons toward their nuclear and extended families emerged as a distinctive regional and ethnic core value that has practical implications for the substance, administration, and communication of allocation frameworks.ConclusionsMaryland and Central Texas residents expressed a common, overriding concern about the fairness of allocation decisions. Central Texas deliberants, however, more readily expounded upon family as a central consideration. In Central Texas, family is a principal, culturally inflected lens through which life and death matters are often viewed. Conveners of other pandemic-related public engagement exercises in the United States have advocated the benefits of transparency and inclusivity in developing an ethical allocation framework; this study demonstrates cultural competence as a further advantage.

Surging Solidarity: Reorienting Ethics for Pandemics

Public discourse about ethics in the COVID-19 pandemic has tended to focus on scarcity of resources and the protection of civil liberties. We show how these preoccupations reflect an established disaster imaginary that orients the ethics of response. In this paper, we argue that pandemic ethics should instead be oriented through a relational account of persons as vulnerable vectors embedded in existing networks of care. We argue for the creation of a new disaster imaginary to shape our own understandings of the interrelated social, political, and economic hardships under conditions of social distancing. We develop a pandemic ethics framework rooted in uBuntu and care ethics that makes visible the underlying multidimensional structural inequities of the pandemic, attending to the problems of resource scarcity and inequities in mortality while insisting on a response that surges existing and emergent forms of solidarity.

Lay people's interpretation of ethical values related to mass vaccination; the case of A(H1N1) vaccination campaign in the province of Quebec (French Canada).

Pandemic influenza ethics frameworks are based on respect of values and principles such as regard for autonomy, responsibility, transparency, solidarity and social justice. However, very few studies have addressed the way in which the general population views these moral norms. (i) To analyse the receptiveness of the population of French-speaking Quebecers to certain ethical principles promoted by public health authorities during the AH1N1 vaccination campaign. (ii) To add to the limited number of empirical studies that examine the population's perception of ethical values. Eight months after the end of the AH1N1 vaccination campaign in the Province of Quebec (Canada), 100 French-speaking Quebecers were assembled in ten focus groups. Discussions focussed on the level of respect shown by public health authorities for individual autonomy, the limits of appeals for solidarity, the balance between vaccination efficiency and social justice towards non-prioritized subpopulations, vaccination as a demonstration of civic duty and social responsibility. The population acknowledged a high level of individual responsibility towards family members and agreed to vaccination to protect children and ageing parents. However, the concepts of civic duty and solidarity did not elucidate unanimous support, despite the fact that social justice stood out as a dominant value of public morals. The ethical principles promoted in influenza pandemic ethics frameworks are subject to reinterpretation by the population. An ethic of public health must consider their understanding of the fundamental values that legitimize mass vaccination.

Minnesota Pandemic Ethics Project Update

Readers of the article by Thomas and Young1 will be interested to know that the Minnesota Pandemic Ethics Project was completed in 2010. A broadly based panel developed frameworks for ethically rationing several types of health resources in a severe influenza pandemic: antiviral medications, N95 respirators, surgical masks, vaccines, and mechanical ventilators. The panel’s recommendations2 are distinguished by (1) the extensive public engagement used to develop its guidance3; (2) a realization that multiple ethical frameworks are required; (3) commitments to balance multiple ethical objectives in each ethical framework; (4) sustained attention to the needs, interests, and perspectives of socially vulnerable groups4; and (5) signaling when it may be appropriate to consider age and prioritize younger people before older people—especially children before adults—among groups who are at the same relative risk of morbidity and mortality. All told, more than 600 people participated in the project, including the general public, expert advisers from multiple disciplines, and stakeholders with particular professional and organizational perspectives. The Web site referenced in the article by Thomas and Young is no longer active. Final project reports are available at http://www.health.state.mn.us/divs/idepc/ethics.

Social Justice in Pandemic Preparedness

Pandemic influenza planning in the United States violates the demands of social justice in 2 fundamental respects: it embraces the neutrality of procedural justice at the expense of more substantive concern with health disparities, thus perpetuating a predictable and preventable social injustice, and it fails to move beyond lament to practical planning for alleviating barriers to accessing care. A pragmatic social justice approach, addressing both health disparities and access barriers, should inform pandemic preparedness. Achieving social justice goals in pandemic response is challenging, but strategies are available to overcome the obstacles. The public engagement process of one state's pandemic ethics project influenced the development of these strategies.

Attending to Social Vulnerability When Rationing Pandemic Resources

Pandemic plans are increasingly attending to groups experiencing health disparities and other social vulnerabilities. Although some pandemic guidance is silent on the issue, guidance that attends to socially vulnerable groups ranges widely, some procedural (often calling for public engagement), and some substantive. Public engagement objectives vary from merely educational to seeking reflective input into the ethical commitments that should guide pandemic planning and response. Some plans that concern rationing during a severe pandemic recommend ways to protect socially vulnerable groups without prioritizing access to scarce resources based on social vulnerability per se. The Minnesota Pandemic Ethics Project (MPEP), a public engagement project on rationing scarce health resources during a severe influenza pandemic, agrees and recommends an integrated set of ways to attend to the needs of socially vulnerable people and avoid exacerbation of health disparities during a severe influenza pandemic. Among other things, MPEP recommends: 1. Engaging socially vulnerable populations to clarify unique needs and effective strategies; 2. Engaging socially vulnerable populations to elicit ethical values and perspectives on rationing; 3. Rejecting rationing based on race, socioeconomic class, citizenship, quality of life, length of life-extension and first-come, first-served; 4. Prioritizing those in the general population for access to resources based on combinations of risk (of death or severe complications from influenza, exposure to influenza, transmitting influenza to vulnerable groups) and the likelihood of responding well to the resource in question. 5. Protecting critical infrastructures on which vulnerable populations and the general public rely; 6. Identifying and removing access barriers during pandemic planning and response; and 7. Collecting and promptly analyzing data during the pandemic to identify groups at disproportionate risk of influenza-related mortality and serious morbidity and to optimize the distribution of resources.

Re-visioning Public Health Ethics: A Relational Perspective

Canada is in the forefront of thinking about the unique and complex issues of contemporary public health ethics. However, an inordinate focus on the urgent issues of emergency preparedness in pandemic and reliance on bioethical analysis steeped in the autonomy and individual rights tradition of health care and research do not serve adequately as the basis for an ethic of public health with its focus on populations, communities and the common good. This paper describes some concerns regarding the focus on pandemic ethics in isolation from public health ethics; identifies inadequacies in the dominant individualistic ethics framework; and summarizes nascent work on the concepts of relational autonomy, relational social justice and relational solidarity that can inform a re-visioning of public health ethics. While there is still much work to be done to further refine these principles, they can help to reclaim and centre the common and collective good at risk in pandemic and other emergency situations. Minimally, these principles require a policy-making process that is truly transparent, fair and inclusive; is sensitive and responsive to the workings of systemic inequalities; and requires public recognition of the fact that we enter any crisis with varying degrees of inequity. Public policy response to crisis must not forseeably increase existing inequities.

Listen! The Value of Public Engagement in Pandemic Ethics

We commend Baum and colleagues (2009) for undertaking a much-needed exploratory examination of public opinion concerning social distancing during a pandemic. We concur with Baum and colleagues and ...

Public Engagement on Social Distancing in a Pandemic: A Canadian Perspective

Click to increase image sizeClick to decrease image size Acknowledgment The authors would like to thank the CanPREP and Engaging Voices team for their contributions in collecting and analyzing the data, and send thanks to the participants of our town halls and surveys. The authors would also like to acknowledge the CIHR for their generous support through our SARS grant, Engaging Voices of the Public grant, and CanPREP grant. Ross E.G. Upshur is supported by the Canada Research Chair in Primary Care Research. Contributors to the University of Toronto Joint Centre for Bioethics Pandemic Ethics Working Group Commentary are Jason X. Nie, Sachin S. Sahni, Clara E.S. Sellers, Maxwell J. Smith, A.M. Viens, Ross E.G. Upshur.