Background: Despite an increase in health research conducted in Africa, there are still inadequate human resources with research ethics training and lack of local long-term training opportunities in research ethics. A research ethics training program named United States-Mali Research Ethics Training Program (US-Mali RETP) was established through a partnership between the George Washington University Milken Institute School of Public Health (GWSPH), USA and University of Sciences, Techniques & Technologies of Bamako (USTTB), to address the critical need for improved bioethics training, (...) leadership, and policy in Mali. Methods: The aims of the capacity building programme are achieved by leveraging US and Africa-based expertise to strengthen research ethics education and capacity through: (1) intensive faculty development to design ethics training curricula; (2) development of a research ethics specialization within the existing Masters of Public Health program (MPH); and (3) establishing professional development courses through short-term training workshops and webinars to address research and professional needs in ethics. Results: The program will strengthen USTTB’s capacity of research ethics by training at least 15 MPH students over 5 years to prepare the next generation of ethics researchers. During the first two years of the program, a new ethics training curricula was developed, two cohorts of Master’s students were enrolled, and a series of webinars and workshops were conducted with participation of Malian and international researchers. Conclusions: US-Mali RETP will promote a sustainable bioethics enterprise at USTTB, and enable dissemination of research ethics training to increase health research capacity in Mali. (shrink)

BackgroundObtaining informed consent for participation in genomic research in low-income settings presents specific ethical issues requiring attention. These include the challenges that arise when providing information about unfamiliar and technical research methods, the implications of complicated infrastructure and data sharing requirements, and the potential consequences of future research with samples and data. This study investigated researchers’ and participants’ parents’ experiences of a consent process and understandings of a genome-wide association study of malaria involving children aged five and under in Mali. (...) It aimed to inform best practices in recruiting participants into genomic research.MethodsA qualitative rapid ethical assessment was undertaken. Fifty-five semi-structured interviews were conducted with the parents of research participants. An additional nine semi-structured interviews were conducted with senior research scientists, research assistants and with a member of an ethics committee. A focus group with five parents of research participants and direct observations of four consent processes were also conducted. French and translated English transcripts were descriptively and thematically coded using OpenCode software.ResultsParticipants’ parents in the MalariaGEN study had differing understandings of the causes of malaria, the rationale for collecting blood samples, the purposes of the study and the kinds of information the study would generate. Genomic aspects of the research, including the gene/environment interaction underlying susceptibility or resistance to severe malaria, proved particularly challenging to explain and understand.ConclusionsThis study identifies a number of areas to be addressed in the design of consent processes for genomic research, some of which require careful ethical analysis. These include determining how much information should be provided about differing aspects of the research and how best to promote understandings of genomic research. We conclude that it is important to build capacity in the design and conduct of effective and appropriate consent processes for genomic research in low and middle-income settings. Additionally, consideration should be given to the role of review committees and community consultation activities in protecting the interests of participants in genomic research. (shrink)

Malian farmers’ traditional system for managing seed of sorghum, an indigenous crop of vital importance for food security and survival, can be conceptualized as a commons. Although this system maintains a wide range of varieties and helps ensure access to seed, its ability to create and widely disseminate new varieties to meet evolving opportunities and challenges is limited. A network of farmer groups, public breeding programs, and development organizations collaborating in decentralized creation and dissemination of sorghum varieties in Mali is (...) examined regarding (1) how the network developed and what activities it conducts; (2) the resulting varietal diversity, varietal performance and organizational models; and (3) the elements of the traditional seed system that were maintained, strengthened or transformed. A single-case study approach was used that relies on published literature, official catalogues of released varieties and a database of farmer seed-cooperative requests for foundation seed. The functioning of the network and its varietal-, seed-, and organizational- outcomes are documented and the elements of the traditional sorghum seed system that are maintained or strengthened are analyzed. The evolution of the network’s reliance on commoning as a social process and its strengthening of core Seed Commons features are discussed with a view to the network’s contributions to targeted development outcomes and potential replicability. The case demonstrates how creating a framework for collaboration, enabling actors and organizations to take on collective responsibility while maintaining distributed decision-making at local level, opens opportunities for transforming farming- and food-systems towards sustainability and resilience. (shrink)