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

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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
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  Asian Bioethics Review  June 2010 Volume 2, Issue 2 124 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  ATHULA SUMATHIPALA, AAMIR JAFAREY, LEONARDO D. DE CASTRO, AASIM AHMAD, DARRYL MARCER, SANDYA SRINIVASAN, NANDINI KUMAR, SISIRA SIRIBADDANA, SLEMAN SUTARYO, ANANT BHAN, DANANJAYA  WAIDYARATNE, SRIYAKANTHI BENERAGAMA, CHANDRANI JAYASEKERA, SARATH EDIRISINGHA,  AND CHESMAL SIRIWARDHANA Abstract Disasters, natural or man-made, can occur virtually anytime and anywhere in the world. Tey bring mass destruction and loss of human lives. Te effects of a disaster can be amplified many times in resource  poor settings, especially in developing countries. In a post-disaster period, many clinical interventions and a lot of research takes place which focuses on the disaster-affected populations. ARTICLES : REPORT   124–142 Asian Bioethics Review  June 2010 Volume 2, Issue 2  125  Ethical Issues in Post-Disaster Clinical Interventions and Researc Athula Sumathipala et al. While many of these interventions and research are conducted in the hour of need, some, unfortunately, are opportunistic. While many of these activities happen in accordance with internationally accepted ethical and other regulations, many of them violate ethical norms, and disaster-affected populations end up being exploited. Also, many ethical regulations are culturally inappropriate for the setting where research is taking place. In the aftermath of the 2004 tsunami, a group of Sri Lankan and international academics and researchers observed these irregularities and  formed a group to counter the exploitation of vulnerable populations, especially in developing countries. Te Working Group on Disaster Research and Ethics (WGDRE) was formed in 2007 and has produced a set of ethical guidelines applicable to post-disaster research focusing on the developing world perspective. Introduction On 26 December 2004, an earthquake with a magnitude of 9.3 occurred re-sulting in the catastrophic tsunami which affected 12 countries. The human impact of the tsunami was enormous in terms of families affected, displaced or dead. Indonesia, Sri Lanka, India and Thailand were the most affected countries. Several authors of this paper, as members of Institute for Research and Development (IRD), were involved in relief and psychosocial work in the immediate aftermath of the tsunami. They had firsthand experiences of a post-disaster provision of care to a vulnerable population, and of how provision of care and clinical interventions are affected in a developing country setting. In the long-term post-disaster period, they experienced the influx of foreign academics and researchers intent on conducting various researches on these tsunami-affected populations, and saw how beneficial and detrimental these research activities can be on the said populations. Many of these researchers  were from the developed world and their research agendas and interventions  were based on a western perspective which acted negatively on the local vul-nerable populations. All these experiences led them to recognise the need for a sound ethical framework for post-disaster clinical interventions and research  with a developing world perspective. This recognition in turn led to the forma-tion of the Working Group on Disaster Research Ethics (WGDRE) in 2007  with the collaboration of academics and researchers from South Asian and Southeast Asian developing countries.  Asian Bioethics Review  June 2010 Volume 2, Issue 2 126 Background and Significance Disasters  According to EM-DAT Emergency Disasters Data Base (WHO), there were 16,000 major disasters and over 500,000 deaths over the last hundred years. In 2006, 44% of disasters happened in Asia. Large scale disasters such as the 2004 tsunami in the Indian Ocean, 2005 earthquake in Pakistan,   floods in India, 2008 landslide in the Philippines, 2008 earthquake in China and typhoon in Myanmar, the 9/11 terrorist attacks and Hurricane Katrina in the US, and the 07/07 tube bombing in London, have brought about many novel challenges related to human rights, ethical issues and social policies. During disasters, government policies (or their absence) and the influx and activities of a wide variety of non-governmental organisations affect mobilisation of res-ponse to and provision of care to those affected. Disasters in the Context of Existing Global Divide  The global divide and disparities already existing within societies become wider during disasters, especially in the developing countries, as well as in under-developed regions of developed countries. 1 Furthermore, disasters by their very nature may result in vulnerability of individuals and of social groups; especially children, women, impoverished communities and individuals (some with long-term disability), whether they live in the developed or developing world. 2 Human right abuses, conflict and emergencies have been shown to be asso-ciated with poor mental health outcomes, physical and social conditions; 3 all of these three can occur post-disaster. Human Subject Research Following Disasters Disasters cause destruction, death, disease/disorders, displacement, disappear-ance, and disarray, all of which have implications for mental health, public health, ethical/human rights and social policies. 4 There is a growing collection of empirical evidence about best practices in responding to post-disaster health needs; however this needs to be buttressed through more field research. Hence, research pertaining to human subjects is crucial in the disaster context. 5 Such research can range from clinical trials involving medical interventions to social science research involving focus group discussions. 6 Existing Global Divide in the Context of Research Ethics Less than 10% of the world’s research resources are earmarked for 90% of the health problems while 93% of the world’s burden of preventable mortality  127  Ethical Issues in Post-Disaster Clinical Interventions and Researc Athula Sumathipala et al. occurs in developing countries. 7 Only 6% of psychiatric and 7% of medical articles in leading international journals srcinated from 90% of the global population. 8 Little empirical research is available on the ethics of research in middle and lower income countries, and the extent and nature of ethical problems on human subject protection in research. 9 Existing Evidence Base and Gaps The divide in global research and publications highlighted above is the same if not worse in relation to disaster research. Gaps in existing knowledge are highly likely, as research related to disasters and the ethical issues has not been systematically mapped. The evidence base of mental health interventions for people exposed to con-flict and disasters is weak, especially for psychological interventions conducted in the midst of emergencies. 10 Potential Ethical Dilemmas Given the sudden nature of the disasters and the general breakdown of services and systems, research may be carried out without proper scientific rigour or ethical considerations. Several examples can be shown to support this. A case study was published by IRD on how a Japanese research team tried to take biological samples out of Sri Lanka in a study to test stress biomarkers  without any ethical approval. In another example, a research testing cognitive ability was conducted on tsunami survivors also without any ethical approval. The list of such incidences are long and it is important to point out that on the other end, numerous important research projects were and are still being carried out with proper ethical approval and standards. This proves the double side of the coin where research and interventions can be carried out ethically and unethically. If post-disaster research is important and can be done ethically, why would unethical research take place? This may be unintentional due to a lack of awareness of ethical issues, or intentional due to conflict of interests, deliberate exploitation of vulnerable survivors or a lack of respect for survivors. 11 Disaster response should be integrated, appropriate and evidence-based. Research needs to be contextual, and culturally and regionally appropriate. However, exploitation and abuse of vulnerable survivors should be prevented. 12 It may be unethical not to conduct research in such situations, since ethical research that takes into account the needs and priorities of affected communi-ties can contribute to mitigating the effects of future disasters.  Asian Bioethics Review  June 2010 Volume 2, Issue 2 128   Therefore, in addition to the accepted national and international guidelines for conduct of research, particular attention should be paid to enhanced ethical standards when conducting research in disaster-affected situations. These include the potential for harm resulting from the research process, and potential for exploitation of research participants and the affected community. 13 However they offer little technical guidance. 14 More stringent policies and guidelines have to be followed to prevent un-ethical data collection and exploitation of the disaster survivors, 15 giving due attention to issues such as: (i) what types of research; (ii) how soon; (iii) if based on local needs and priorities; and (iv) complexities when combined with aid and clinical care. During the post-tsunami period, as stated in the introductory part of this paper, a need arose for a concentrated campaign to counter the detrimental effects of interventions and research conducted on the vulnerable tsunami af-fected populations. A campaign titled “Prevent Re-traumatisation of the Traumatised” was launched with local, regional and international works, along with an invited editorial in he Lancet   on tsunami research and ethics. 16 This initiative was developed in collaboration with regional and international professionals with similar interests (Appendix 1). Why This Initiative and Another Set of Guidelines Important but limited work has been done in this area.  Journal of raumatic Stress   published a    special section in 2004 on the ethics of disaster research, based on a meeting organised by The New York Academy of Medicine and the US National Institute of Mental Health. 17 It identified four areas of critical importance for the development, evaluation, and conduct of research protocols after a disaster: (a) decision-making capacity of potential participants: (b) vul-nerability: (c) risks and benefits of participation: and (d) informed consent. 18 The attendees were professionals from diverse backgrounds and family members from victims of the Oklahoma and World Trade Center attacks. They agreed that research after a disaster is important and can be done ethically, and highlighted that the survivors are not necessarily vulnerable. This notion of disaster survivors not being always vulnerable is not always shared by ethicists from the developing world. In complex disasters such as the 2004 tsunami and earthquake in Pakistan, all existing infrastructure collapsed unlike in circumscribed disasters such as the Oklahoma bombings and World Trade Center attacks. Survivors in the Asian disasters willingly participated in multiple needs assessments and research pos-sibly in the hope of benefitting from participation. 19
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