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“Disaster Bioethics: An Introduction”

This volume is the second in a series addressing public health ethics and is edited by Dónal P. O’Mathuna and Bert Gordign of Dublin City University and Mike Clarke of Queen’s University Belfast. This area of ethics is claimed by the editors to be one of the fastest-growing subdisciplines of bioethics and focuses on the ethical issues raised by disasters. Its purpose is

to fill a gap in the existing literature by providing thoroughgoing, book-length treatment of the most important topics in Public Health Ethics—which has otherwise, for the most part, only been partially and/or sporadically addressed in journal articles, book chapters, or sections of volumes concerned with Public Health Ethics (O’Mathúna, Gordijn, and Clarke 2014b, preface).

It is uncertain if this gap exists in the case of mass-casualty events. For instance, much has been written on the ethics of responding to influenza pandemics. Thus, it is unclear whether such a “gap” exists in this area and whether this volume fills it. Still, there is little doubt regarding the importance of the topic and any meaningful contribution should be welcomed.

The book is comprised of 13 chapters, all of which are discussed in this review, contributed by individual authors and divided into two sections. The first section is concerned with questions of health care ethics in disasters. The second focuses on disaster research ethics. Although consisting of only 219 pages, a short review of the book is made difficult by the density and breadth of the material covered.

“Disaster” generally refers to events of sudden onset resulting in “overwhelming need and insufficient resources” (O’Mathúna, Gordijn, and Clarke 2014a, 3). Such events generally fall into one of three categories: (1) natural disasters (i.e., floods, earthquakes, etc.); (2) human-related disasters (i.e., industrial and transportation accidents, acts of terrorism, etc.); and (3) complex disasters arising from a combination of the two.

Disasters are complex events that most often raise important ethical issues. A framework for addressing these issues has not yet been developed. This volume does not attempt to “provide a theoretical foundation for ethics or disaster bioethics” (O’Mathúna, Gordijn, and Clarke 2014a, 4). Rather, it seeks to make a contribution to applied ethics. No single methodology is proposed or conclusions of general applicability made. Instead, ethical issues are raised that must be discussed to advance the field of disaster bioethics, which “examines issues of moral conduct, questions of right and wrong, as encountered by individuals as they respond to the needs of people impacted by disaster” (O’Mathúna, Gordijn, and Clarke 2014a, 6).

Ethical Issues Encountered in Responding to Health Care Needs During Disasters

Bioethics traditionally focuses upon micro-ethics (i.e., decision-making for the individual), making macro-issues concerning context and background irrelevant. The ethical imperative is saving lives, rescuing individuals, and protecting populations. Henk Ten Have, in “Macro-Triage in Disaster Planning,” believes that a macro-ethical approach to disaster bioethics is required to determine what is best for the victim, focusing on the “larger context of human reality beyond the immediate emergency situation” (Ten Have 2014, 30).

However, this is no mean task. In “Ethics and Emergency Disaster Response: Normative Approaches and Training Needs for Humanitarian Health Care providers,” Schwartz, et al. (2014) conducted extensive interviews with health care professionals who provided humanitarian health aid after disasters. Their clinical decision-making was complicated by (1) resource scarcity, (2) security concerns, and (3) disparate cultural expectations leading to stress and burnout. Three resources for supporting ethical humanitarian health care are proposed: formal qualitative collection and analysis of stories of ethical challenges experienced by providers in the field; their thoughts and suggestions as to what resources would be useful in the field; and existing and emerging concepts in ethical theory and scholarship. They argue that the final resources will remain incomplete until the “perspectives of local health professionals, patients and communities are added” (Schwartz et al. 2014, 47).

Barilan, Brusa, and Halperin (2014), in “Triage in Disaster Medicine: Ethical Strategies in Various Scenarios,” consider triage in mass-casualty events where the focus shifts from the individual to the community. A utilitarian triage scheme is employed to maximize the overall medical benefit of limited resources. Under this scheme, much depends on the definition of the “good” to be achieved. The utilitarian model has three chief medical “goods”: (1) saving life vs. deferring death; (2) reduction in suffering; and (3) reduction of long-term morbidity and disability. The realization of these goals can only be determined retrospectively. In disasters, not only are treatment resources lacking but also the infrastructure to following up on treatment outcomes. Under the hybrid scheme proposed here, once a victim is admitted by triage he or she becomes a patient and thereafter care is directed with little regard to the needy victims who have been excluded.

In “When Relief Comes From a Different Culture: Sri Lanka’s Experience of the Asian Tsunami,” Sumathipala (2014) focuses on cultural differences encountered in providing humanitarian aid. Most large-scale disasters require an international response, bringing together different cultures that might otherwise have limited or difficult interactions. “Ethical entry” into disaster-affected communities should be considered a prerequisite by those who are “duty bound” not to add further negative consequences to the disaster survivors (Sumathipala 2014, 65). This requires cultural sensitivity.

Various ethical issues can arise in communicating to the public during health emergencies. Scanlon (2014), in “Ethical Issues in Health Communications: Strategies for the (Inevitable) Next Pandemic,” believes that advance planning and training are essential in this area. The elements of crisis communications are recurrent and can be anticipated and a plan formulated.

In “Evidence and Healthcare Needs During Disasters,” Ahmad, Mahmud, and O’Mathúna (2014) explore evidence-based medicine, which is increasingly called for in guiding humanitarian response. Evidence-based medicine employs current best evidence in making decisions about the care of individual patients. This requires the integration of clinical expertise with best available clinical research evidence, while taking into account a patient’s unique values and circumstances. Evidence-based practices in humanitarian disaster relief are only now being developed. In evidenced-based medicine, external evidence takes priority over expert opinion. However, with disaster relief, expert opinion continues to reign supreme, with most disaster relief operations remaining largely “eminence-based” rather than “evidence-based” (Ahmad, Mahmud, and O’Mathúna 2014, 98).

Research Ethics and Disasters

In “Interests Divided: Risks to Disaster Research Subjects vs. Benefits to Future Disaster Victims,” Shuster (2014) views disaster research as privilege. People should not be used merely as a means to achieve other people’s goals. The focus is upon clinical research placing subjects at risk of physical harm. A distinction is also made based on timing. In the immediate aftermath of a disaster, research may be less acceptable, while it may be acceptable in the recovery phase, when true informed subject consent can be obtained.

In disaster research there has been an emphasis on the benefit to future patients and society as a justification for its conduct. In “Purple Dinosaurs and Victim Consent to Research in Disasters,” Annas (2014) views this as shifting the emphasis off the fundamental rights of research subjects (i.e., informed consent and the right to withdraw). He concludes that if the subject cannot provide free and informed consent, the research should not be done no matter how great the possible future benefit. To do otherwise would be to ignore the rights of the individual in the attempted utilitarian justification of such research.

In “Setting Disaster Research Priorities,” Murray and Kessel (2014) discuss three broad approaches to setting disaster research priorities. The first approach involves the principles relating to priority-setting in the use of health care resources. The second approach looks to organizations that have already set disaster research priorities (i.e., Médecins Sans Frontières [MSF], which has published ethical principles relating to international research). The final approach involves the frameworks adopted by the United Nations for dealing with disasters. The goals created by this framework are: (1) integrating disaster risk considerations into policies; (2) planning and programs at all levels; (3) strengthening of institutions, mechanisms, and capacities at all levels to build disaster resilience; and (4) incorporating risk-reduction principles into the design and implementation of emergency preparedness, response, and recovery programs.

Most often subjects in disaster research have some vulnerability. All research has, to a varying degree, some risk. In “Studying Vulnerable Populations in the Context of Enhanced Vulnerability,” Macklin (2014) notes that being vulnerable does not alone raise the level of research risk. But she believes that vulnerable subjects do deserve additional protection, even with research of relatively low risk. Different types of disasters call for different safeguards. Not only should the type of disaster be taken into account but also the proximity in time to the disaster, the severity of injury or trauma, and other factors. The type and extent of required protection will vary and cannot be specified in advance.

Schopper (2014), in “Research Ethics Governance in Disaster Situations,” notes the lack of internationally accepted guidelines for disaster research. General research ethical guidelines are helpful but not fully applicable to disaster research. The example of the Ethics Review Board of MSF is cited, which provides a procedure for preapproval of generic research protocols. This allows expedited approval of final protocols once tailored to the research to be conducted. Such a system could be developed and an international governing body created to provide international guidance for disaster research.

Finally, in “Ethical Concerns in Disaster Research—A South African Perspective,” Moodley (2014) analyzes South Africa’s experience with HIV/AIDS and drug-resistant tuberculosis as a public health disaster. He describes the rapid evolution of research ethics regulatory infrastructure and guidelines in South Africa and how this approach to research ethics review in disaster settings is being incorporated into South African guidelines currently under review.

Conclusion

This is not a monumental work, but it is one of importance. It asks more questions than it answers, which is fitting in an emerging discipline. It will serve to shape and focus future research and debate. Not all contributions are of equal import, but each has something to contribute to the discussion. This is a volume that will be of value to those interested in exploring the acceptable ethical bounds of conduct during times of disaster. Such individuals should include not only ethicists but also public health professionals, humanitarian aid workers, and academics who might conduct research in a disaster setting.