Research Ethics Capacity Building in Sub-Saharan Africa: A Review of NIH Fogarty-Funded Programs 2000–2012

Abstract

The last fifteen years have witnessed a significant increase in investment in research ethics capacity development throughout the world. We examine nine research ethics training programs that are focused on Sub-Saharan Africa and supported by the US National Institutes of Health. We collected data from grants awards’ documents and annual reports supplemented by questionnaires completed by the training program directors. Together, these programs provided long-term training in research ethics to 275 African professionals, strengthened research ethics committees in 19 countries in Sub-Saharan Africa, and created research ethics curricula at many institutions and bioethics centers within Africa. Trainees’ leadership resulted in new national systems and policies on research ethics, human tissue storage and export, and methods of monitoring compliance with research ethics guidelines. Training programs adapted to challenges that arose due to varied trainees’ background knowledge in ethics, duration of time available for training, spoken and written English language skills, administrative obstacles, and the need to sustain post-training research ethics activities. Our report showcases the development of awareness of research ethics and building/strengthening of basic research ethics infrastructure in Sub-Saharan Africa. Nevertheless, the increasing amount and complexity of health research being conducted in Sub-Saharan Africa suggests the need for continued investment in research ethics capacity development in this region. This paper is part of a collection of papers analyzing the Fogarty International Center’s International Research Ethics Education and Curriculum Development program.

A case study of researchers’ knowledge and opinions about the ethical review process for research in Botswana

“…These findings are consistent with recent recommendations to establish graduate training in bioethics and research ethics for UB students, and mandatory research ethics training for researchers so as to enhance research ethics capacity and awareness within the university (Hyder et al, 2013). Indeed, across sub-Saharan Africa, the teaching of research ethics has undergone a shift over the past 15 years from sporadic workshops to more organized and formal programs -certificate, master's, and doctoral (Ndebele et al, 2014). The Fogarty International Center of the US National Institutes of Health has played a key role in the establishment of these programs (Millum and Sina, 2014).…”

A Case-Study of the Resources and Functioning of Two Research Ethics Committees in Western India

“…The utility of such programs has been documented. For example, Silverman, Edwards, Shamoo, and Matar (2013) describe the benefits of a Fogarty-sponsored and other sponsored ethics training programs in the Middle East, and Ndebele and colleagues (2014) provide a review of Fogarty-sponsored programs addressing research ethics capacity building in sub-Saharan Africa. Training programs should be tailored to the needs of the institution and its members and may range from short-term intensive one-week fundamental ethics trainings for REC members and faculty to long-term (six months to two years) training programs for a smaller number of interested REC members and faculty.…”

Enhanced REC collaborative review through videoconferencing

“…Over the past 26 years, the Fogarty International Center, part of the US National Institutes of Health, has supported research ethics capacity throughout the world and especially in Africa; this has significantly broadened the literature related in the field. [12][13][14] Some of the ethical areas that are generally not well developed include appropriate management of vulnerable populations, the powerful manifestations of conflict of interest, confusion regarding standards of care, and the role and responsibilities of the investigator. [15] Beyond these areas, there is evidence that many African RECs have inadequate financial support and find it difficult, given the economic realities in their countries, to insist on more funding for committee education and administrative support.…”