Articles on humanitarian research ethics

We have compiled peer-reviewed articles that address ethical issues in humanitarian research. If you would like to suggest articles that we should add, please feel welcome to send them to us. We’ve labelled the papers that are available open access (OA). 

Ethics review and oversight of humanitarian research

Aarons, D. (2017). Research in epidemic and emergency situations: A model for collaboration and expediting ethics review in two Caribbean countries. Developing world bioethics.

Alirol, E., Kuesel, A. C., Guraiib, M. M., de la Fuente-Núñez, V., Saxena, A., & Gomes, M. F. (2017). Ethics review of studies during public health emergencies-the experience of the WHO ethics review committee during the Ebola virus disease epidemic. BMC medical ethics18(1), 43. (OA)

O’Mathúna, D. (2012). Roles and challenges with IRBs with disaster research. Research Practitioner13, 167-174.

Packenham, J. P., Rosselli, R. T., Ramsey, S. K., Taylor, H. A., Fothergill, A., Slutsman, J., & Miller, A. (2017). Conducting Science in Disasters: Recommendations from the NIEHS Working Group for Special IRB Considerations in the Review of Disaster Related Research. Environmental health perspectives125(9), e094503-e094503.

Perlman, D. (2008). Public health practice vs research: implications for preparedness and disaster research review by State Health Department IRBs. Disaster medicine and public health preparedness2(3), 185-191.

Schopper, D., Ravinetto, R., Schwartz, L., Kamaara, E., Sheel, S., Segelid, M. J., … & Upshur, R. (2017). Research Ethics Governance in Times of Ebola. Public Health Ethics10(1), 49-61.

Schopper, D. (2014). Research ethics governance in disaster situations. In Disaster bioethics: Normative issues when nothing is normal (pp. 175-190). Springer Netherlands.

Schopper, D., Dawson, A., Upshur, R., Ahmad, A., Jesani, A., Ravinetto, R., … & Singh, J. (2015). Innovations in research ethics governance in humanitarian settings. BMC medical ethics16(1), 10. (OA)

Schopper, D., Upshur, R., Matthys, F., Singh, J. A., Bandewar, S. S., Ahmad, A., & van Dongen, E. (2009). Research ethics review in humanitarian contexts: the experience of the independent ethics review board of Médecins Sans Frontières. PLoS Medicine6(7), e1000115. (OA)

Siriwardhana, C. (2015). Rethinking vulnerability and research: defining the need for a post-research ethics audit. Asian Bioethics Review7(2), 188-200.

 

Ethical issues arising in disaster research

Ausbrooks, C. Y. B., Barrett, E. J., & Martinez-Cosio, M. (2009). Ethical issues in disaster research: Lessons from Hurricane Katrina. Population Research and Policy Review28(1), 93-106.

Benight, C. C., & McFarlane, A. C. (2007). Challenges for disaster research: recommendations for planning and implementing disaster mental health studies. Journal of Loss and Trauma12(5), 419-434.

Brun, C. (2009). A geographers’ imperative? Research and action in the aftermath of disaster. The Geographical Journal175(3), 196-207.

Chung, B., Jones, L., Campbell, L. X., Glover, H., Gelberg, L., & Chen, D. T. (2008). National recommendations for enhancing the conduct of ethical health research with human participants in post-disaster situations. Ethn Dis18(3), 378-83.

Collogan, L. K., Tuma, F., Dolan‐Sewell, R., Borja, S., & Fleischman, A. R. (2004). Ethical issues pertaining to research in the aftermath of disaster. Journal of traumatic stress17(5), 363-372.

Del Ben, K. S., McLeish, A. C., & Elkin, T. D. (2006). Research and ethics following a natural disaster: from the public’s point of view. BEHAVIOR THERAPIST29(6), 128.

Eckenwiler, L., Pringle, J., Boulanger, R., & Hunt, M. (2015). Real‐time Responsiveness for Ethics Oversight During Disaster Research. Bioethics29(9), 653-661.

Ferreria, R., Buttell, F., & Ferreria, S. (2015). Ethical considerations for conducting disaster research with vulnerable populations. Journal of Social Work Values and Ethics3, 379-384.

Hunt, M. R., Anderson, J. A., & Boulanger, R. F. (2012). Ethical implications of diversity in disaster research. American journal of disaster medicine7(3), 211-221.

Hunt, M., Tansey, C. M., Anderson, J., Boulanger, R. F., Eckenwiler, L., Pringle, J., & Schwartz, L. (2016). The challenge of timely, responsive and rigorous ethics review of disaster research: views of research ethics committee members. PLoS one11(6), e0157142. (OA)

Jesus, J. E., & Michael, G. E. (2009). Ethical considerations of research in disaster-stricken populations. Prehospital and disaster medicine24(2), 109-114.

Knoppers, B. M., Saginur, M., & Cash, H. (2006). Ethical issues in secondary uses of human biological materials from mass disasters. The Journal of Law, Medicine & Ethics34(2), 352-365.

Levine, C. (2004). The concept of vulnerability in disaster research. Journal of Traumatic Stress17(5), 395-402.

Macklin, R. (2014). Studying vulnerable populations in the context of enhanced vulnerability. In Disaster bioethics: Normative issues when nothing is normal (pp. 159-173). Springer Netherlands.

Matsui, K., & Tashiro, S. (2014). Ethical challenges for the design and conduct of mega-biobanking from Great East Japan Earthquake victims. BMC medical ethics15(1), 55. (OA)

North, C. S., Pfefferbaum, B., & Tucker, P. (2002). Ethical and methodological issues in academic mental health research in populations affected by disasters: The Oklahoma City experience relevant to September 11, 2001. CNS spectrums7(8), 580-584.

Rosenstein, D. L. (2004). Decision-making capacity and disaster research. Journal of Traumatic Stress17(5), 373-381.

Sumathipala, A., & Siribaddana, S. (2005). Research and clinical ethics after the tsunami: Sri Lanka. The Lancet366(9495), 1418-1420.

Tansey, C. M., Anderson, J., Boulanger, R. F., Eckenwiler, L., Pringle, J., Schwartz, L., & Hunt, M. (2017). Familiar ethical issues amplified: how members of research ethics committees describe ethical distinctions between disaster and non-disaster research. BMC medical ethics18(1), 44. (OA)

Taylor, H. A. (2016). Review and Conduct of Human Subjects Research after a Natural or Man–Made Disaster: Findings from a Pilot Study. Narrative Inquiry in Bioethics6(3), 211-222.

 

Ethical issues arising in research during armed conflict or population displacement

Boyden, J. (2004). Anthropology under fire: Ethics, researchers and children in war. Children and youth on the front line: Ethnography, armed conflict and displacement, 237-258.

Chaitin, J. (2003). “I Wish he hadn’t Told Me that”: Methodological and Ethical Issues in Social Trauma and Conflict Research. Qualitative health research13(8), 1145-1154.

Chiumento, A., Khan, M. N., Rahman, A., & Frith, L. (2016). Managing Ethical Challenges to Mental Health Research in Post‐Conflict Settings. Developing world bioethics16(1), 15-28.

El-Khani, A., Ulph, F., Redmond, A. D., & Calam, R. (2013). Ethical issues in research into conflict and displacement. The Lancet382(9894), 764-765.

Fleischman, A. R., & Wood, E. B. (2002). Ethical issues in research involving victims of terror. Journal of Urban Health79(3), 315-321.

Ford, N., Mills, E. J., Zachariah, R., & Upshur, R. (2009). Ethics of conducting research in conflict settings. Conflict and health3(1), 7. (OA)

George, M. (2015). Ethical Lessons Learned from Conducting Refugee-Based Research in an Indian Refugee Camp. Journal of Human Rights Practice7(3), 451-465.

Goodhand, J. (2000). Research in conflict zones: ethics and accountability. Forced Migration Review8(4), 12-16.

Hill, P. (2004). Ethics and Health Systems Research in’Post’-Conflict Situations. Developing World Bioethics4(2), 139-153.

Jacobsen, K., & Landau, L. B. (2003). The dual imperative in refugee research: some methodological and ethical considerations in social science research on forced migration. Disasters27(3), 185-206.

Leaning, J. (2001). Ethics of research in refugee populations. The Lancet357(9266), 1432-1433.

Mackenzie, C., McDowell, C., & Pittaway, E. (2007). Beyond ‘do no harm’: The challenge of constructing ethical relationships in refugee research. Journal of Refugee studies20(2), 299-319.

National Research Council, & Committee on Population. (2002). Research ethics in complex humanitarian emergencies: Summary of a workshop. National Academies Press.

Siriwardhana, C., Adikari, A., Jayaweera, K., & Sumathipala, A. (2013). Ethical challenges in mental health research among internally displaced people: ethical theory and research implementation. BMC medical ethics14(1), 13. (OA)

Wood, E. J. (2006). The ethical challenges of field research in conflict zones. Qualitative Sociology29(3), 373-386.

Zwi, A. B., Grove, N. J., Mackenzie, C., Pittaway, E., Zion, D., Silove, D., & Tarantola, D. A. N. I. E. L. (2006). Placing ethics in the centre: Negotiating new spaces for ethical research in conflict situations. Global Public Health1(3), 264-277.

 

Ethical issues arising in research during public health emergencies

Calain, P., Fiore, N., Poncin, M., & Hurst, S. A. (2009). Research ethics and international epidemic response: the case of Ebola and Marburg hemorrhagic fevers. Public Health Ethics2(1), 7-29.

Edwards, S. J. (2013). Ethics of clinical science in a public health emergency: drug discovery at the bedside. The American Journal of Bioethics13(9), 3-14.

Ezeome, E. R., & Simon, C. (2010). Ethical problems in conducting research in acute epidemics: the Pfizer meningitis study in Nigeria as an illustration. Developing world bioethics10(1), 1-10.

Haire, B. G., & Folayan, M. O. (2016). Ebola “Ring” vaccine trial was ethically innovative. American journal of public health106(9), e1-e1.

Langat, P., Pisartchik, D., Silva, D., Bernard, C., Olsen, K., Smith, M., … & Upshur, R. (2011). Is there a duty to share? Ethics of sharing research data in the context of public health emergencies. Public Health Ethics4(1), 4-11.

Resnik, D. B., Miller, A. K., Kwok, R. K., Engel, L. S., & Sandler, D. P. (2015). Ethical issues in environmental health research related to public health emergencies: reflections on the GuLF STUDY. Environmental health perspectives123(9), A227.

Rid, A., & Emanuel, E. J. (2014). Ethical considerations of experimental interventions in the Ebola outbreak. The Lancet384(9957), 1896-1899.

Shaw, D., & Elger, B. S. (2016). Publication ethics in public health emergencies. Journal of Public Health, 1-3.

Smith, M. J., & Upshur, R. E. (2015). Ebola and learning lessons from moral failures: who cares about ethics?. Public Health Ethics8(3), 305-318.

Tansey, C. M., Herridge, M. S., Heslegrave, R. J., & Lavery, J. V. (2010). A framework for research ethics review during public emergencies. Canadian Medical Association Journal182(14), 1533-1537.

 

Ethical issues arising in research in multiple types of humanitarian crises

Mfutso-Bengo, J., Masiye, F., & Muula, A. (2008). Ethical challenges in conducting research in humanitarian crisis situations. Malawi Medical Journal20(2), 46-49.

O’Mathúna, D. (2015). Research ethics in the context of humanitarian emergencies. Journal of evidence-based medicine8(1), 31-35.

O’Mathuna, D., & Siriwardhana, C. (2017). Research ethics and evidence for humanitarian health. The Lancet. 390(10109), 2228-2229.

Pringle, J. D., & Cole, D. C. (2009). Health research in complex emergencies: A humanitarian imperative. Journal of Academic Ethics7(1-2), 115-123.

Van der Loos, K. I., Longstaff, H., Virani, A., & Illes, J. (2014). Consent in escrow. Journal of Law and the Biosciences2(1), 69-78.

Walker, P. H., Bibb, S. C. G., & Elberson, K. L. (2005). Research issues in preparedness for mass casualty events, disaster, war, and terrorism. Nursing Clinics40(3), 551-564.

Zachariah, R., Janssens, V., & Ford, N. (2006). Do Aid Agencies Have an Ethical Duty to Comply with Researchers? A Response to Rennie. Developing World Bioethics6(2), 78-80.

 

Guidance for ethical research

Black, R. (2003). Ethical codes in humanitarian emergencies: from practice to research?. Disasters27(2), 95-108.

Browne, K. E., & Peek, L. (2014). Beyond the IRB: An ethical toolkit for long-term disaster research. International Journal of Mass Emergencies and Disasters32(1), 82-120.

Chiumento, A., Rahman, A., Frith, L., Snider, L., & Tol, W. A. (2017). Ethical standards for mental health and psychosocial support research in emergencies: review of literature and current debates. Globalization and health13(1), 8. (OA)

Mezinska, S., Kakuk, P., Mijaljica, G., Waligóra, M., & O’Mathúna, D. P. (2016). Research in disaster settings: a systematic qualitative review of ethical guidelines. BMC medical ethics17(1), 62. (OA)

Sumathipala, A., Jafarey, A., De Castro, L. D., Ahmad, A., Marcer, D., Srinivasan, S., … & Waidyaratne, D. (2010). Ethical issues in post-disaster clinical interventions and research: A developing world perspective. Key findings from a drafting and consensus generation meeting of the Working Group on Disaster Research and Ethics (WGDRE) 2007. Asian Bioethics Review2(2), 124-142.