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ABSTRACTBenefit sharing is an ethical issue that underscores the need to find a balance between access to genetic resources and the provision of fair benefits in exchange for access. The Human Genome Organisation (HUGO) is one of the few initiatives to have engaged with the topic of benefit sharing in human genomics. However, there is a lack of clarity on what benefit sharing entails in human genomics research and how it could be implemented in practice. This paper reports on a qualitative study that explored the views and expectations of benefit sharing by a group of genomics researchers in sub‐Saharan Africa. Overall, while there was little awareness of benefit sharing among the researchers, there was support for benefit sharing in human genetics, and this was based on principles of fairness, solidarity, and reciprocity. This in‐depth explorative study demonstrates the need for genomics research consortia in Africa to have open discussions on benefit sharing and to develop ethics frameworks for benefit sharing in population genomics studies in Africa. HUGO's statement on benefit sharing and the Nagoya Protocol could provide guidance.

Intro -- Preface -- Contents -- About the Editors -- Chapter 1: Editorial: African Perspectives and Approaches for African Healthcare Challenges -- 1.1 Introduction -- 1.2 The Virtual Absence of African Perspectives and Approaches -- 1.3 Significance of a Local Perspective and Approach -- 1.4 Contents and Potential Value of an African Perspective and/or Approach -- 1.5 Conclusion: Overview of Book Sections -- References -- Part I: Emerging Deadly Pathogens and Clinical Practice -- Chapter 2: How and Why the Global Emerging Pathogens Treatment Consortium Was Created -- 2.1 Introduction -- 2.2 Global Emerging Pathogens Treatment (GET) Consortium -- 2.2.1 Governance of the GET Consortium -- 2.3 Conclusion -- References -- Chapter 3: Emerging Infectious Diseases: A Historical and Scientific Review -- 3.1 Overview and History -- 3.2 Stages in the Emergence of an Infectious Disease -- 3.3 Reported EID Outbreaks -- 3.4 Animal Diseases of Economic and/or Zoonotic Impact -- 3.4.1 One Health Program, South Africa -- 3.4.2 Rinderpest -- 3.4.3 Rift Valley Fever -- 3.4.4 Peste de Petits Ruminants (PPR) -- 3.5 Control of EIDs and Deadly Outbreaks in Humans -- 3.5.1 Surveillance -- 3.5.2 Response Mechanism -- 3.5.3 Research and Training -- 3.5.4 Public Health Control Measures -- 3.6 Conclusion -- References -- Chapter 4: Epidemiology and Management of Lassa Fever in the West African Sub-Region: Overcoming the Socio-cultural Challenges -- 4.1 Case Vignette -- 4.2 Introduction -- 4.3 Epidemiology -- 4.3.1 Factors That Promote the Epidemics -- 4.4 Virology -- 4.5 Pathogenesis -- 4.6 Clinical Presentation -- 4.6.1 The Case Definition for Suspected Lassa Fever -- 4.6.2 Socio-cultural Challenges in Clinical Diagnosis and Management of Lassa Fever -- 4.7 Laboratory Diagnosis -- 4.7.1 Logistic Challenges in Laboratory Diagnosis of Lassa Virus Infection -- 4.8 Treatment.

International collaborations have become the standard model for global health research and often include researchers and institutions from high income countries (HICs) and low- and middle-income countries (LMICs). While such collaborations are important for generating new knowledge that will help address global health inequities, there is evidence to suggest that current forms of collaboration may reproduce unequal power relations. Therefore, we conducted a qualitative study with scientists, researchers and those involved in research management, working in international health collaborations. Interviews were conducted between October 2019 and March 2020. We conducted 13 interviews with 15 participants. From our findings, we derive three major themes. First, our results reflect characteristics of equitable, collaborative research relationships. Here we find both relational features, specifically trust and belonging, and structural features, including clear contractual agreements, capacity building, inclusive divisions of labour, and the involvement of local communities. Second, we discuss obstacles to develop equitable collaborations. These include exclusionary labour practices, donor-driven research agendas, overall research culture, lack of accountability and finally, the inadequate financing of indirect costs for LMIC institutions. Third, we discuss the responsibilities for promoting science equity of funders, LMIC researchers, LMIC institutions, and LMIC governments. While other empirical studies have suggested similar features of equity, our findings extend these features to include local communities as collaborators in research projects and not only as beneficiaries. We also suggest the importance of funders paying for indirect costs, without which the capacity of LMIC institutions will continually erode. And finally, our study shows the responsibilities of LMIC actors in developing equitable collaborations, which have largely been absent from the literature.

BACKGROUND: Fragile X Syndrome (FXS) is a neurogenetic condition that significantly impacts the lives of affected individuals and their families due to its association with intellectual disability (ID) and stigma. METHOD: In this paper, we present the findings of an ethnographic study in the community of a patient who received a genetic diagnosis for FXS in Cameroon. This study builds on data from 28 participants of a royal family and 58 from the community who participated in 20 in‐depth interviews and nine focus group discussions. RESULTS: We identified two types of stigma in this community: public stigma directed towards the royal family and associative stigma experienced by royal family members. We outline the stereotyping labels used for the family and its children with Fragile X Syndrome and describe the stigma‐power dynamic between the community members and the royal family. First, most villagers use less stigmatizing terms to addressing FXS children from the chieftaincy because of their position in society. Secondly, due to their social position, the royal family uses their status to negotiate marriages with community members. From these observations, we can suggest that the primary role of stigma in this community is to keep people away from FXS and keep them down through domination and exploitation. CONCLUSION: We advocate that other researchers examine if the same pattern exists in other inheritable forms of ID and conduct more qualitative research on FXS in Africa.

We assessed the extent of research ethics approval and informed consent reporting in publications emanating from Cameroon and indexed in PubMed from 2005–2009. In our review of 219 full-length articles, we found that 57.53% reported ethics approval, 70.78% informed consent, and 50.68% both ethics approval and informed consent. Reporting these procedures was more common in randomized clinical trials than in other study designs. Also, 59.52% of the articles on vulnerable populations documented ethics approval and 76.19% documented informed consent. This study also identified some structures for ethics review and recommends some next steps for research on the quality of ethics review in Cameroon.