Ethical challenges in the design and conduct of locally relevant international health research

Abstract

In this paper, we consider some of the challenges associated with the ethical need to conduct locally relevant international health research. We examine a cervical cancer research initiative in a resource-poor community in South Africa, and consider the extent to which this research was relevant to the expressed needs and concerns of community members. Results from informal discussions and a series of 27 focus groups conducted in the community provide insight into the community's needs and concerns, and its recommendations for how the research could be made more relevant to the community. We discuss these findings in the context of recent theory and literature on the role of community engagement in promoting local relevance and responsiveness in community-based health research. We anticipate that the paper's findings may help international health researchers better identify and assess the challenges of conducting locally relevant research across major global gaps in wealth and health.

Confidentiality, Privacy, and Respect: Experiences of Female Sex Workers Participating in HIV Research in Andhra Pradesh, India

“…The current paper builds on an expanding number of studies examining ethical challenges in the design and conduct of HIV prevention studies, particularly among highly stigmatized populations (Fisher et al, 2008; Fisher, 2010, Fisher & Wallace, 2000; Norris, Jackson, & Khoshnood, 2012; Simon, Mosavel, & van Stade, 2007). Overall, Participant responses illuminated aspects of the consent process, staff gender and demeanor, study environment, survey content, and administrative organization and monitoring that were key factors influencing whether FSW perceived their confidentiality and privacy had been maintained, and whether they felt the study was conducted respectfully.…”

Working with Non-Profit Organisations During an International Fieldtrip

“…At the same time, despite a wealth of existing literature covering the issues likely to be encountered during the fieldtrip, many students found these links much more difficult to make than academic researchers and often focused solely on the specifics of the research site from the outset, rather than engaging research from similar contexts and applying this to their research design. The following are excerpts from the students' responses: Thus, while the course leader and students attempted to ensure that the NPOs were actively engaged throughout the research process and that the work done by the students was relevant to and useful for the host NPOs, this process was only partially successful and at times frustrating (Simon et al 2007).…”

“…Building on these concerns, and acknowledging the influence of postcolonial approaches to research practice (Simon, Mosavel & Van Stade 2007), this chapter reflects on the possibilities for pursuing co-learning and knowledge co-production afforded by an undergraduate development geography fieldtrip from the UK to South Africa during which students from the University of Sheffield worked with nonprofit organisations (NPOs) in Bloemfontein, Free State, South Africa.…”

“…These practices, which resonate with postcolonial approaches to development research, serve to address the power inequalities often implicit in the designing and conducting of research -processes that are led by academics or students with little cognisance of the needs or priorities of host organisations or communities. Instead, service learning approaches seek to involve host communities or organisations in consultations around the formulation of research ideas and design of research projects to ensure robust and sensitive research that is relevant, useful and accessible to different stakeholders (Simon et al 2007).…”

Bioethics Training in Uganda: Report on Research and Clinical Ethics Workshops

“…Whenever multinational research involves collaboration between a wealthy sponsoring country and a resource-poor host country, however, there is great potential for exploitation and harm. The reasons for this circumstance lie in the host countries' poverty and desperation for medical treatments, their lack of medico-legal systems to serve as watchdogs on powerful foreign entities conducting the research, and their lack of expertise with ethical issues which govern research (Macklin 2004;Simon et al 2007;Benatar 2002). Also, fundamental differences in moral theory and sense of interpersonal relationships may make those in traditional cultures vulnerable to exploitation.…”