We identify the ways the policies of leading international bioethics journals limit the participation of researchers working in the resource-constrained settings of low- and middle-income countries in the development of the field of bioethics. Lack of access to essential scholarly resources makes it extremely difficult, if not impossible, for many LMIC bioethicists to learn from, meaningfully engage in, and further contribute to the global bioethics discourse. Underrepresentation of LMIC perspectives in leading journals sustains the hegemony of Western bioethics, limits the (...) presentation of diverse moral visions of life, health, and medicine, and undermines aspirations to create a truly “global” bioethics. Limited attention to this problem indicates a lack of empathy and moral imagination on the part of bioethicists in high-income countries, raises questions about the ethics of bioethics, and highlights the urgent need to find ways to remedy this social injustice. (shrink)

With increasing calls for global health research there is growing concern regarding the ethical challenges encountered by researchers from high-income countries (HICs) working in low or middle-income countries (LMICs). There is a dearth of literature on how to address these challenges in practice. In this article, we conduct a critical analysis of three case studies of research conducted in LMICs. We apply emerging ethical guidelines and principles specific to global health research and offer practical strategies that researchers ought to consider. (...) We present case studies in which Canadian health professional students conducted a health promotion project in a community in Honduras; a research capacity-building program in South Africa, in which Canadian students also worked alongside LMIC partners; and a community-university partnered research capacity-building program in which Ecuadorean graduate students, some working alongside Canadian students, conducted community-based health research projects in Ecuadorean communities. We examine each case, identifying ethical issues that emerged and how new ethical paradigms being promoted could be concretely applied. We conclude that research ethics boards should focus not only on protecting individual integrity and human dignity in health studies but also on beneficence and non-maleficence at the community level, explicitly considering social justice issues and local capacity-building imperatives. We conclude that researchers from HICs interested in global health research must work with LMIC partners to implement collaborative processes for assuring ethical research that respects local knowledge, cultural factors, the social determination of health, community participation and partnership, and making social accountability a paramount concern. (shrink)

Background: Increasing collaboration between industrialised and developing countries in human research studies has led to concerns regarding the potential exploitation of resource deprived countries. This study, commissioned by the former National Bioethics Advisory Commission of the United States, surveyed developing country researchers about their concerns and opinions regarding ethical review processes and the performance of developing country and US international review boards .Methods: Contact lists from four international organisations were used to identify and survey 670 health researchers in developing countries. (...) A questionnaire with 169 questions explored issues of IRB review, informed consent, and recommendations.Results: The majority of the developing country researchers were middle aged males who were physicians and were employed by educational institutions, carrying out research on part time basis. Forty four percent of the respondents reported that their studies were not reviewed by a developing country IRB or Ministry of Health and one third of these studies were funded by the US. During the review process issues such as the need for local language consent forms and letters for approval, and confidentiality protection of participants were raised by US IRBs in significantly higher proportions than by host country IRBs.Conclusion: This survey indicates the need for the ethical review of collaborative research in both US and host countries. It also reflects a desire for focused capacity development in supporting ethical review of research. (shrink)

This case study outlines an ethics approval process experienced during a maternal health research project in Nepal. The Government of Nepal established the Nepal Health Research Council in 1991, along with the Scientific and Ethics Committee reviewing health related research. However, not all researchers apply for ethics approval. Although researchers may claim a lack of clarity on the kinds of research studies needing approval, the authors argue that the guidelines are sufficiently clear if explored and duly followed. The inconsistencies in (...) seeking ethics approval from NHRC could simply mean that researchers are not aware of this ethical review process. Perhaps the guidelines are not strictly enforced. Nevertheless, as researchers it is our responsibility to seek ethical approval as a matter of principle, without considering it a barrier to research. (shrink)

This case describes and reflects on ethical questions that we faced as we obtained permission to conduct research on local government policy implementation processes in India, which has no legal guidelines or REBs for ethical oversight of social science research. We focus on questions of voluntary consent and exposure to unintended risks, where, in this case, staff in local governments might feel coerced to participate based on the institutional permission to conduct research granted by their superiors.

Experience has shown that the application of ethical guidelines developed for research in developed countries to research in developing countries can be, and often is, impractical and raises a number of contentious issues. Various attempts have been made to provide guidelines more appropriate to the developing world context; however, to date these efforts have been dominated by the fields of bioscience, medical research and nutrition. There is very little advice available for those seeking to undertake collaborative social science or natural (...) science research in developing countries and what is there tends to be held within disparate sources. Charting the development of a set of ethics documentation for future use by the Ecosystem Services for Poverty Alleviation programme research community, this paper outlines past and present attitudes towards ethics procedures amongst this community and suggests ways in which ethics procedures might be made more relevant and user-friendly to researchers working in this area. (shrink)

Determining the process for obtaining local research ethics approval, or whether such a requirement even exists, may not always be straightforward in the context of some developing countries where such information may not be easily accessible to overseas researchers. How far do a researcher's ethical obligations extend in determining whether there is a requirement for local research ethics approval, and what form this would take? In other words, how far should a researcher be expected to go in seeking out local (...) ethics approval, especially where such information is not readily available? As part of this discussion, this case study describes the steps that I took as the principal researcher, before I was able to reasonably conclude that no national ethics approval requirement existed in Guyana for my particular research, which involved interviewing justice service providers about the implementation of Guyana's Domestic Violence Act. Drawing on this experience, I discuss various considerations that an international development researcher should bear in mind when planning and conducting research that seeks to meet leading international norms of research ethics. (shrink)

This paper argues that international development research should be submitted to the oversight of research ethics committees from the countries where data will be collected. This includes research conducted by individuals who may fall outside the jurisdictions of most ethics guidelines or policies, such as individuals contracted by non-governmental organizations. The argument is grounded in an understanding of social justice that recognizes that not seeking local ethics approval can be an affront to the decolonization movement, and may lead to significant (...) direct harms to participants. Local ethics oversight can help ensure projects appropriately take into consideration local laws, regulations, priorities and context. For example, a local research ethics committee may be in a better position than a foreign one to assess whether any given proposed project carries context-specific risks. In addition, submitting to a local research ethics committee is to acknowledge the legitimacy of local authorities, thereby taking a stance against the history of colonizing disempowerment. Local oversight is a mechanism to increase the accountability of researchers working abroad: if respect for local authority and tailoring to local context are to be upheld, there must be mechanisms to ensure that research that does not meet these requirements does not proceed. Objections based on the limited oversight capacity in some countries and on concerns related to the politicization of the review process are discussed. Finally, the roles and responsibilities of the various stakeholders in the implementation of greater local ethics oversight are laid out. (shrink)

This case study illustrates the author's narrative of his experience obtaining local research ethics approval in Tanzania. It highlights the additional requirements a foreign researcher in Tanzania can encounter with visa approval which is a separate process from research ethics approval. While fulfilling the visa requirements may not be directly related to the ethical administration of research per se, it is part of the responsible conduct of research which, among others, includes respect for the local laws and procedures of the (...) host country. The narrative shows that a responsible access to field data in such cases requires fulfilling two separate but complimentary processes: local research ethics review and proper visa attainment. Further, an example of an 'irresponsible' access to data is also presented for comparison and examination of the consequences. (shrink)

This case study outlines an ethics approval process experienced during a maternal health research project in Nepal. The Government of Nepal established the Nepal Health Research Council in 1991, along with the Scientific and Ethics Committee reviewing health related research. However, not all researchers apply for ethics approval. Although researchers may claim a lack of clarity on the kinds of research studies needing approval, the authors argue that the guidelines are sufficiently clear if explored and duly followed. The inconsistencies in (...) seeking ethics approval from NHRC could simply mean that researchers are not aware of this ethical review process. Perhaps the guidelines are not strictly enforced. Nevertheless, as researchers it is our responsibility to seek ethical approval as a matter of principle, without considering it a barrier to research. (shrink)

Determining the process for obtaining local research ethics approval, or whether such a requirement even exists, may not always be straightforward in the context of some developing countries where such information may not be easily accessible to overseas researchers. How far do a researcher's ethical obligations extend in determining whether there is a requirement for local research ethics approval, and what form this would take? In other words, how far should a researcher be expected to go in seeking out local (...) ethics approval, especially where such information is not readily available? As part of this discussion, this case study describes the steps that I took as the principal researcher, before I was able to reasonably conclude that no national ethics approval requirement existed in Guyana for my particular research, which involved interviewing justice service providers about the implementation of Guyana's Domestic Violence Act. Drawing on this experience, I discuss various considerations that an international development researcher should bear in mind when planning and conducting research that seeks to meet leading international norms of research ethics. (shrink)

This case study touches on issues that may arise in international development research, with reflections based on experiences conducting research in Peru. The two issues to be discussed are that of cultural differences in the consent documentation process, and ensuring that the benefits of research flow back to research participants.