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Ethical Considerations of Research in Disaster-Stricken Populations

Published online by Cambridge University Press:  28 June 2012

John E. Jesus*
Affiliation:
Beth Israel Deaconess Medical Center, Boston Massachusetts, USA
Glen E. Michael
Affiliation:
Department of Emergency Medicine, University of Virginia, Charlottesville, Virginia, USA
*
Harvard-Affiliated Emergency Medicine ResidencyBeth Israel Deaconess Medical CenterWest CC-2One Deaconess RoadBoston, MA 02215USA E-mail: [email protected]

Abstract

Recently, emphasis has been placed on improving and expanding research in disaster response and the treatment of disaster-stricken populations. However, research in these settings presents unique ethical challenges with which the scientific and biomedical ethics communities continue to struggle. At the core of the controversy is the question of how best to balance the critical need for research with the equally important obligation to respect and protect the interests of research participants within the unique stress of a disaster. This concern stems from the potential of increased vulnerability of individuals stricken by disaster over and above their usual vulnerability to risk and exploitation as research subjects. Ethical principles that must be considered in these situations are the same as those that are important when conducting any human research: respect for persons, non-maleficence, beneficence, and justice. This paper explores the ethical challenges that accompany inadequate resources and personnel, the potential vulnerability of research participants, the dual role of physician-researcher, and the importance of the public's perception and trust are explored. It then proposes a number of potential avenues through which to conduct ethically justifiable research that could answer many of the pressing questions in disaster medicine and response.

Type
Special Report
Copyright
Copyright © World Association for Disaster and Emergency Medicine 2009

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References

1. The Deputy Editor and the Editorial Board: Breaking down territorial boundaries: A call to all professions and disciplines. Disaster Med Public Health Prep 2007;1(1):34.CrossRefGoogle Scholar
2. Banatvala, N, Zwi, AB: Conflict and health. Public health and humanitarian interventions: Developing the evidence base. BMJ 2000;321(7253):101105.Google Scholar
3. Birnbaum, ML: Moving forward. Prehospital Disast Med 2007;22(4):261262.CrossRefGoogle ScholarPubMed
4. Lennquist, S: Call for papers in the International Journal of Disaster Medicine. International Journal of Disaster Medicine 2003;1(1):68.Google Scholar
5. World Health Organization: Consultation on Applied Health Research Priorities in Complex Emergencies.Geneva:World Health Organization, 1997.Google Scholar
6. (US) Institute of Medicine Committee on the Future of Emergency Care in the United States Health System: Hospital-Based Emergency Care: At the Breaking Point. Washington, DC: National Academies Press; 2007.Google Scholar
7. The World Medical Association: Medical ethics in the event of disasters. Bull Med Ethics 1994;102:911.Google Scholar
8. Norris, FH, Friedman, MJ, Watson, PJ, et al. : 60,000 disaster victims speak: Part I. An empirical review of the empirical literature, 1981–2001. Psychiatry 2002;65(3):207239.Google Scholar
9. Childress, JF: Triage in Response to Bioterrorist Attack. In: Moreno, JD, (ed): In the Wake of Terror. Cambridge: The MIT Press; 2003, p 80.Google Scholar
10. Beauchamp, TL, Childress, JF: Principles of Biomedical Ethics. 5th ed. New York: Oxford University Press; 2001.Google Scholar
11. Katz, J: Abuse for the Sake of Science. In: Caplan, AL, (ed): When Medicine Went Mad: Bioethics and the Holocaust. Totowa: Humana Press; 1992, pp 233270.Google Scholar
12. Beecher, H: Ethics and clinical research. N Engl J Med 1966;274:13541360.Google Scholar
13. Steinbrook, R: Protecting research subjects: The crisis at Johns Hopkins. N Engl J Med 2002;346(9):716720.CrossRefGoogle ScholarPubMed
14. United States Department of Health and Human Services: 45 C.F.R 46: Protection of Human Subjects. Available at http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm. Accessed 18 July 2007.Google Scholar
15. (US) National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research: The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: Department of Health, Education, and Welfare, 1978.Google Scholar
16. Ruzek, JI, Zatzick, DF: Ethical considerations in research participation among acutely injured trauma survivors: An empirical investigation. Gen Hosp Psychiatry 2000;22(1):2736.CrossRefGoogle ScholarPubMed
17. Norris FH: 50,000 disaster victims speak: An empirical review of the empirical literature. Part I: Range, magnitude, and duration of effects: Prepared for the National Center for PTSD and the Center for Mental Health Se rvices; 2001.Google Scholar
18. Levine, C: The concept of vulnerability in disaster research. J Trauma Stress 2004;17(5):395402.CrossRefGoogle ScholarPubMed
19. Rosenstein, DL: Decision-making capacity and disaster research. J Trauma Stress 2004;17(5):373381.CrossRefGoogle ScholarPubMed
20. Moreno, JD: Convenient and Captive Populations. In: Kahn, JP, Mastroianni, AC, Sugarman, J, (eds): Beyond Consent: Seeking Justice in Research. New York: Oxford University Press; 1998:111129.Google Scholar
21. Collogan, LK, Tuma, F, Dolan-Sewell, R et al. : Ethical issues pertaining to research in the aftermath of disaster. J Trauma Stress 2004;17(5):363372.CrossRefGoogle ScholarPubMed
22. Katz, J: Human experimentation and human rights. St Louis Univ Law J 1993;38(1):754.Google Scholar
23. Freedman, B: Equipoise and the ethics of clinical research. N Engl J Med 1987;317(3):141145.Google Scholar
24. O'Toole, T, Mair, M, Inglesby TV: Shining light on “DarkWinter”. Clin Infect Dis 2002;34(7):972983.CrossRefGoogle Scholar
25. Gamble, VN: Under the shadow of Tuskegee: African Americans and health care. Am J Public Health 1997;87(11):17731778.Google Scholar
26. Meredith, LS, Eisenman, DP, Rhodes, H, et al. : Trust influences response to public health messages during a bioterrorist event. J Health Commun 2007;12(3):217232.CrossRefGoogle ScholarPubMed
27. Sugarman, J: Examining the provisions for research without consent in the emergency setting. Hastings Cent Rep 2007;37(1):1213.Google Scholar
28. Triner, W, Jacoby, L, Shelton, W, et al. : Exception from informed consentenrollment in emergency medical research: attitudes and awareness. Acad Emerg Med 2007;14(2):187191.Google Scholar
29. Yarborough, M, Sharp, RR: Restoring and preserving trust in biomedical research. Acad Med 2002;77(1):814.Google Scholar
30. United States Food and Drug Administration: 21 C.F. R.56.109. Institutional review boards: IRB functions and operations. Available at http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfCFR/CFRSearch.cfm? fr = 56. 109. Accessed 28 July 2007.Google Scholar
31. Garner, A, Lee, A, Harrison, K, Schultz, CH: Comparative analysis of multiple-casualty incident triage algorithms. Ann Emerg Med 2001;38(5):541548.Google Scholar
32. United States Food and Drug Administration: 21 C.F.R. 50.24. Exception from informed consent requirements for emergency research. Available at http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfCFR/CFRSearch.cfm? fr=50.24. Accessed 27 July2007.Google Scholar
33. Ernst, AA, Weiss, SJ, Nick, TG, et al. : Minimal-risk waiver of informed consent and exception from informed consent (Final Rule) studies at institutional review boards nationwide. Acad Emerg Med 2005;12(11):11341137.Google Scholar