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Ethical Concerns in Disaster Research—A South African Perspective

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Disaster Bioethics: Normative Issues When Nothing is Normal

Part of the book series: Public Health Ethics Analysis ((PHES,volume 2))

Abstract

Situated at the southern-most tip of the African continent, South Africa is geographically stable with few acute natural disasters. However spurts of political violence create acute man-made disasters from time to time. While disasters typically have a sudden monumental onset they can also have an insidious onset and then escalate to reach catastrophic proportions. Over the past three decades South Africa has had the latter experience of a public health disaster in the form of HIV/AIDS and drug resistant tuberculosis. Irrespective of the mode of onset of the disaster the sequelae are similar: significant physical, psychological, social and environmental harm. Consequently this public health disaster in South Africa created unparalleled opportunities for research. Research ethics regulatory infrastructure and guidelines evolved in response to the public health disaster. When disasters occur in resource depleted settings a situation of escalated vulnerability ensues. South African Research Ethics Committees (RECs) immediately developed guidelines to address this vulnerability. However, acute disaster research ethics is not currently included in national research ethics guidelines or standard operating procedures of RECs in the country. This chapter will revisit the ethical dilemmas that arose in the context of HIV/AIDS research and how these issues were encapsulated in guidelines. It will also examine the approaches to research ethics review that can be implemented in the setting of an acute disaster. These approaches are to be incorporated into South African research ethics guidelines that are currently under revision.

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References

  • Abdool Karim, Salim S. 1998. Placebo controls in HIV perinatal transmission trials: A South African’s viewpoint. American Journal of Public Health 88: 564–566.

    Article  Google Scholar 

  • Abdool Karim, Quarraisha, Salim S. Abdool Karim, Hoosen M. Coovadia, and Merwyn Susser. 1988. Informed consent for HIV testing in a South African hospital: Is it truly informed and truly voluntary? American Journal of Public Health 88: 637–640.

    Article  Google Scholar 

  • Abdool Karim, Salim S., Kogieleum Naidoo, Anneke Grobler, Nesri Padayatchi, Cheryl Baxter, Andrew Gray, Tanuja Gengiah, Gonasagrie Nair, Sheila Bamber, Aarthi Singh, Munira Khan, Jacqueline Pienaar, Wafaa El-Sadr, Gerald Friedland and Quarraisha Abdool Karim. 2010. Timing of initiation of antiretroviral drugs during tuberculosis therapy. New England Journal of Medicine 362: 697–706.

    Article  Google Scholar 

  • Aiga, Hirotsugu. 2007. Bombarding people with questions: A reconsideration of survey ethics. Bulletin of the World Health Organisation 85 (11): 823.

    Google Scholar 

  • Angell, Marcia. 1997. The ethics of clinical research in the third world. New England Journal of Medicine 337: 847–849.

    Google Scholar 

  • Annas, George., and Michael Grodin. 1998. Human rights and maternal-fetal HIV transmission prevention trials in Africa. American Journal of Public Health 88: 560–563.

    Article  Google Scholar 

  • Berg, Jessica., and Nicholas King. 2006. Strange bedfellows? Reflections on bioethics’ role in disaster response planning. American Journal of Bioethics 6: 3–5.

    Article  Google Scholar 

  • Boulle, Andrew, Polly Claydon, Karen Cohen, Ted Cohen, Francesca Conradie, Krista Dong, Nathan Geffen, Ashraf Grimwood, Rocio Hurtado, Christopher Kenyon, Stephen Lawn, Gary Maartens, Graeme Meintjies, Marc Mendelson, Megan Murray, Molebogeng Rangaka, Iam Sanne, David Spencer, Jantjie Taljaard, Ebrahim Variava, W.D. Francois Venter, and Douglas Wilson. 2010. Prolonged deferral of antiretroviral therapy in the SAPIT trial: Did we need a clinical trial to tell us that this would increase mortality? South African Medical Journal 100: 566–571.

    Google Scholar 

  • Brittain, Victoria. 2000. More die of Aids than war in Africa says Kofi Annan. The Guardian, March 14. http://www.guardian.co.uk/world/2000/mar/14/unitednations. Accessed 1 June 2013.

  • Collogan, Lauren K, Farris Tuma, Regina Dolan-Sewell, Susan Borja, and Alan R. Fleischman 2004. Ethical issues pertaining to research in the aftermath of disaster. Journal of Traumatic Stress 17: 363–372.

    Article  Google Scholar 

  • Collogan, Lauren K, Farris Tuma, and Alan R. Fleischman. 2004. Research with victims of disaster: Institutional review board considerations. IRB: Ethics and Human Research 26: 9–11.

    Article  Google Scholar 

  • Connor, Edward M., Rhoda S. Sperling, Richard Gelber, Pavel Kiselev, Gwendolyn Scott, Mary Jo O’Sullivan, Russell VanDyke, Mohammed Bey, William Shearer, Robert L. Jacobson, Eleanor Jimenez, Edward O’Neill, Brigitte Bazin, Jean-Francois Delfraissy, Mary Culnane, Robert Coombs, Mary Elkins, Jack Moye, Pamela Stratton, and James Balsley for the Pediatric AIDS Clinical Trials Group Protocol 076 Study Group. 1994. Reduction of maternal-infant transmission of human immunodeficiency virus type 1 with zidovudine treatment. New England Journal of Medicine 331: 1173–1180.

    Article  Google Scholar 

  • Coovadia, Hoosen M., and Nigel C. Rollins. 1999. Current controversies in the perinatal transmission of HIV in developing countries. Seminars in Neonatology 4: 193–200.

    Article  Google Scholar 

  • Dheda Keertan, Karen Shean, Alimuddin Zumba, Motasim Badri, Elizabeth Streicher, Liesl Page-Shipp, Paul Wilcox, Melanie-Anne John, Gary Reubenson, Darshini Govindasamy, Michelle Wong, Xavier Padanilam, Alicia Dziwiecki, Paul D. van Helden, Sweetness Siwendu, Julie Jarand, Colin N. Menezes, Avril Burns, Thomas Victor, Robin Warren, Martin P. Grobusch, Martie van der Walt, and Charlotte Kvasnovsky. 2010. Early treatment outcomes and HIV status of patients with extensively drug-resistant tuberculosis in South Africa: A retrospective cohort study. Lancet 375: 1798–1807.

    Article  Google Scholar 

  • Emanuel, Ezekiel J., David Wendler, and Christine Grady. 2002 What makes clinical research ethical? Journal of the American Medical Association 283: 2701–2711.

    Article  Google Scholar 

  • Ford, Nathan, Edward J. Mills, Rony Zachariah, and Ross Upshur. 2009. Ethics of conducting research in conflict settings. BMC Conflict and Health 3: 7.

    Article  Google Scholar 

  • Frimpong-Mansoh, A. 2008. Culture and voluntary informed consent in African health care systems. Developing World Bioethics 8: 104–114.

    Article  Google Scholar 

  • Halsey, Neal A., Alfred Sommer, Donald A. Henderson, and Robert E. Black. 1997. Ethics and international research. British Medical Journal 315: 965–966.

    Article  Google Scholar 

  • Horwood, Jennifer. 2007. Cellulose sulphate microbicide trial halted. Lancet Infectious Diseases 7: 183.

    Article  Google Scholar 

  • Joubert, Gina, Hannes Steinberg, Elna van der Ryst, and Perpetual Chikobvu. 2003. Consent for participation in the Bloemfontein vitamin A trial: How informed and voluntary? American Journal of Public Health 93: 582–584.

    Google Scholar 

  • Kapp, Clare. 2008. South Africa failing people displaced by xenophobia riots. Lancet 14: 1986–1987.

    Article  Google Scholar 

  • Keeton, Claire. 2010. Bridging the gap in South Africa. Bulletin of the World Health Organisation 88: 803–804.

    Article  Google Scholar 

  • Kilpatrick, Dean G. 2004. The ethics of disaster research: A special section. Journal of Traumatic Stress 17: 361–362.

    Article  Google Scholar 

  • Knox, Richard A. 1998. Despite epidemic, South Africa cuts AZT project. Boston Globe Online, December 1. http://www.aegis.org/DisplayContent/DisplayContent.aspx?sectionID=120031. Accessed 7 June 2013.

  • Levine, Carol. 2004. The concept of vulnerability in disaster research. Journal of Traumatic Stress 17: 395–402.

    Article  Google Scholar 

  • Lurie, P., and Sidney M. Wolfe. 1997. Unethical trials of interventions to reduce perinatal transmission of the human immunodeficiency virus in developing countries. New England Journal of Medicine 337: 853–855.

    Article  Google Scholar 

  • Makgoba, William. 1998. Should South Africa embark on clade B vaccine trials? Workshop on ethical issues in the conduct of HIV vaccine trials. Durban, South Africa.

    Google Scholar 

  • Mazzotta, Meredith. 2010. HIV and drug-resistant tuberculosis in South Africa: A perfect storm. Science Speaks: HIV and TB News. http://sciencespeaksblog.org/2010/10/26/hiv-and-drug-resistant-tb-in-south-africa-a-perfect-storm/. Accessed 4 June 2011.

  • Miller, P. B., and C. Weijer. 2003. Rehabilitating equipoise. Kennedy Institute of Ethics Journal 13: 93–118.

    Article  Google Scholar 

  • Molyneux, C. S, N. Peshu, and K. Marsh. 2004. Understanding of informed consent in a low income setting: three case studies from the Kenyan coast. Social Science and Medicine 59: 2547–2560.

    Article  Google Scholar 

  • Moodley, Keymanthri. 1998. Preventing perinatal HIV transmission—does the end justify the means? South African Medical Journal 88: 809–810.

    Google Scholar 

  • Moodley, Keymanthri. 2002. HIV vaccine trial participation in South Africa—An ethical assessment. Journal of Medicine and Philosophy 27: 197–215.

    Article  Google Scholar 

  • Moodley, Keymanthri, Michael Pather, and Landon Myer. 2005. Informed consent and participant perceptions of influenza vaccine trials in South Africa. Journal of Medical Ethics 31: 727–732.

    Article  Google Scholar 

  • Moodley, Keymanthri. 2007. Microbicide research in developing countries: have we given the ethical concerns due consideration? BMC Medical Ethics 8: 10.

    Article  Google Scholar 

  • Moodley, Keymanthri, and Landon Myer. 2007. Health research ethics committees in South Africa 12 years into democracy. BMC Medical Ethics 8: 1.

    Article  Google Scholar 

  • Mouton, Michelle, and Helena Pohlandt-McCormick. 1999. Boundary crossings: Oral history of Nazi Germany and apartheid South Africa—a comparative perspective. History Workshop Journal 48: 41–63.

    Article  Google Scholar 

  • Newman, Elana, and Danny G. Kaloupek. 2004. The risks and benefits of participating in trauma-focused research studies. Journal of Traumatic Stress 17: 383–394.

    Article  Google Scholar 

  • Petra Study Team. 2002. Efficacy of three short-course regimens of zidovudine and lamivudine in preventing early and late transmission of HIV 1 from mother to child in Tanzania, South Africa and Uganda (Petra study): A randomised double-blind, placebo-controlled trial. Lancet 359: 1178–1186.

    Article  Google Scholar 

  • Philpott, Sean, and Udo Schuklenk. 2010. A study that should not have been done. Bioethics Forum, May 5. http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4626&blogid=140. Accessed 1 June 2013.

  • Prevention Web http://www.preventionweb.net/english/countries/statistics/?cid=160. Accessed 2 June 2011.

  • Roddy, Ronald E, Léopold Zekeng, Kelley A. Ryan, Ubald Tamoufe, Sharon S. Weir, and Emelita L. Wong. 1998. A controlled trial of Nonoxynol 9 film to reduce male-to-female transmission of sexually transmitted diseases. New England Journal of Medicine 339: 504–510.

    Article  Google Scholar 

  • Rosenstein, Donald L. 2004. Decision-making capacity and disaster research. Journal of Traumatic Stress 17: 373–381.

    Article  Google Scholar 

  • Rossouw, Theresa, and Keymanthri Moodley. 2011. HIV/AIDS in South Africa: An exploration of the ethical options in Medical ethics, law and human rights: A South African perspective, ed. Keymanthri Moodley, .S 223–247. South Africa: Van Schaik.

    Google Scholar 

  • South African Medical Research Council. 2003. Guidelines on ethics for medical research: HIV preventive vaccine research.

    Google Scholar 

  • Siriwardhana, Chesmal. 2007. Disaster research ethics—A luxury or a necessity for developing countries. Asian Tribune.11: http://www.asiantribune.com/index.php?q=node/4524. Accessed 20 May 2011.

  • UNAIDS. 2010. Global Report. http://www.unaids.org/globalreport. Accessed 7 June 2013.

  • Varmus, H., and D. Satcher. 1997. Ethical complexities of conducting research in developing countries. New England Journal of Medicine 337: 1003–1006.

    Article  Google Scholar 

  • Van Damme, Lut, Gita Ramjee, Michel Alary, Bea Vuylsteke, Verapol Chandeying, Helen Rees, Pachara Sirivongrangson, Leonard Mukenge Tshibaka, Virginie Ettiegne-Traore, Charn Uaheowitchai, Salim S. Abdool Karim, Benoit Masse, Jos Perriens, and Marie Laga. 2002. Effectiveness of COL-1492, a nonoxynol-9 vaginal gel, on HIV-1 transmission in female sex workers: a randomized controlled trial. Lancet 360: 971–977.

    Article  Google Scholar 

  • Vromans, Lyn, Robert D. Schweitzer, Katharine Knoetze, and Ashraf Kagee. 2011. The experience of xenophobia in South Africa. American Journal of Orthopsychiatry 81: 90–93.

    Article  Google Scholar 

  • Wallis, Lee and Wayne Smith. 2011. Disaster Medicine. South Africa: Juta.

    Google Scholar 

  • World Bank. 2011. Poverty analysis—Measuring inequality. http://go.worldbank.org/3SLYUTVYOO. Accessed 20 May 2011.

  • World Medical Association (WMA). 2006. Statement on medical ethics in the event of disasters. http:www.wma.net/en/30publications/10policies/d7/. Accessed 11 November 2011.

  • World Medical Association (WMA). 2008. Declaration of Helsinki: Ethical principles for medical research involving human subjects (revised). Geneva, Switzerland: World Medical Association. http://www.wma.net/en/30publications/10policies/b3/17c.pdf. Accessed 20 May 2011.

  • World Health Organisation (WMA). 2008. Epidemiological Fact Sheets: South Africa, 2008 Update. http://apps.who.int/globalatlas/predefinedReports/EFS2008/full/EFS2008_ZA.pdf. Accessed 30 May 2011.

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Authors and Affiliations

  1. Stellenbosch University, Tygerberg, South Africa

    Keymanthri Moodley

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  1. Keymanthri Moodley
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Correspondence to Keymanthri Moodley .

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Editors and Affiliations

  1. Dublin City University, Dublin, Dublin, Ireland

    Dónal P. O’Mathúna

  2. Dublin City University, Dublin, Ireland

    Bert Gordijn

  3. Queen’s University Belfast, Belfast, Ireland

    Mike Clarke

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Moodley, K. (2014). Ethical Concerns in Disaster Research—A South African Perspective. In: O’Mathúna, D., Gordijn, B., Clarke, M. (eds) Disaster Bioethics: Normative Issues When Nothing is Normal. Public Health Ethics Analysis, vol 2. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-3864-5_13

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