What makes working together work? A scoping review of the guidance on North-South research partnerships.

At their best, research partnerships provide a mechanism to optimize each partner's strengths, make scientific discoveries and achieve development goals. Each partner stands to gain from the relationship and perceives it to be fair. However, partnerships between institutions in the global North and the global South have been beleaguered by structural inequalities and power imbalances, and Northern stakeholders have been criticized for perpetuating paternalistic or neo-colonial behaviours. As part of efforts to redress imbalances and achieve equity and mutual benefit, various principles, guidelines, frameworks and models for partnership have been developed. This scoping review maps the literature and summarizes key features of the guidelines for North-South research partnerships. The review was conducted between October 2020 and January 2021. Three academic journal databases and Google were searched, and additional resources were identified through a hand search of reference lists and expert recommendation. Twenty-two guidelines were identified published between 1994 and 2021 and originating predominantly in the fields of international development and global health. The themes addressed within the guidelines were aggregated using NVivo qualitative analysis software to code the content of each guideline. Topics featuring most prominently in the guidelines were: partner roles, responsibilities and ways of working; capacity strengthening; motivation and goals; resource contributions; agenda setting and study design; governance structures and institutional agreements; dissemination; respect for affected populations; data handling and ownership; funding and long-term commitments. The current study reinforces many of the themes from two recent scoping reviews specific to the field of global health, but gaps remain, which need to be addressed: Southern stakeholders continue to be under-represented in guideline development, and there is limited evidence of how guidelines are used in practice. Further exploration is needed of Southern stakeholder priorities and whether and how guidelines are operationalized

Responding to the COVID-19 Pandemic in Cameroon: A statement from the Cameroon Bioethics Initiative

The ongoing COVID-19 pandemic has caused devastating consequences across economies in the world, with substantial effects on lives and livelihoods. Cameroon has been one of the countries in sub-Saharan Africa with an increasing number of cases and fatalities from the disease. In an effort to support the government’s response to the epidemic, the Cameroon Bioethics Initiative (CAMBIN); a not-for-profit, non-governmental, non-political, non-discriminatory, multidisciplinary association issued a statement on COVID-19, primarily targeting the government and the general public. In this article, we situate the context within which the statement was issued and present the statement in its entirety

"We should be at the table together from the beginning": perspectives on partnership from stakeholders at four research institutions in sub-Saharan Africa.

BACKGROUND: Global health research partnerships have been scrutinised for how they operate and criticised for perpetuating inequities. Guidance to inform fair partnership practice has proliferated and the movement to decolonise global health has added momentum for change. In light of this evolving context, we sought in this study to document contemporary experiences of partnership from the perspective of stakeholders in four sub-Saharan African research institutions. METHODS: We conducted qualitative interviews with 20 stakeholders at research institutions in four countries in anglophone eastern and southern Africa. Interview questions were informed by published guidance on equitable research partnerships. Data was analysed through an iterative process of inductive and deductive coding, supported by NVivo software. RESULTS: Early-career, mid-career and senior researchers and research administrators from four sub-Saharan African research institutions described wide-ranging experiences of partnership with high-income country collaborators. Existing guidelines for partnership provided good coverage of issues that participants described as being the key determinants of a healthy partnership, including mutual respect, role clarity and early involvement of all partners. However, there was almost no mention of guidelines being used to inform partnership practice. Participants considered the key benefits of partnership to be capacity strengthening and access to research funding. Meanwhile, participants continued to experience a range of well-documented inequities, including exclusion from agenda setting, study design, data analysis and authorship; and relationships that were exploitative and dominated by high-income country partners' interests. Participants also reported emerging issues where their institution had been the prime recipient of funds. These included high-income country partners being unwilling to accept a subordinate role and failing to comply with reporting requirements. CONCLUSIONS: Insights from stakeholders in four sub-Saharan African research institutions suggest that contemporary global health research partnerships generate considerable benefits but continue to exhibit longstanding inequities and reveal emerging tensions. Our findings suggest that long-term support targeted towards institutions and national research systems remains essential to fulfil the potential of research led from sub-Saharan Africa. High-income country stakeholders need to find new roles in partnerships and stakeholders from sub-Saharan Africa must continue to tackle challenges presented by the resource-constrained contexts in which they commonly operate

A network of empirical ethics teams embedded in research programmes across multiple sites: opportunities and challenges in contributing to COVID-19 research and responses

Covid-19 continues to teach the global community important lessons about preparedness for research and effective action to respond to emerging health threats. We share the COVID-19 experiences of a pre-existing cross-site ethics network-the Global Health Bioethics Network-which brings together researchers and practitioners from Africa, Europe, and Southeast Asia. We describe the network and its members and activities, and the work-related opportunities and challenges we faced over a one-year period during the pandemic. We highlight the value of having strong and long-term empirical ethics networks embedded across diverse research institutions to be able to: 1) identify and share relevant ethics challenges and research questions and ways of 'doing research'; 2) work with key stakeholders to identify appropriate ways to contribute to the emerging health issue response - e.g., through ethics oversight, community engagement, and advisory roles at different levels; and 3) learn from each other and from diverse contexts to advocate for positive change at multiple levels. It is our view that being embedded and long term offers opportunities in terms of deep institutional and contextual knowledge, existing relationships and access to a wide range of stakeholders. Being networked offers opportunities to draw upon a wide range of expertise and perspectives, and to bring together internal and external insights (i.e.drawing on different positionalities). Long term funding means that the people and resources are in place and ready to respond in a timely way. However, many tensions and challenges remain, including difficulties in negotiating power and politics in the roles that researchers and research institutions can and should play in an emergency, and the position of empirical ethics within research programmes. We discuss some of these tensions and challenges and consider the implications for our own and similar networks in future

Perspectives of different stakeholders on data use and management in public health emergencies in sub-Saharan Africa: a meeting report

During public health emergencies (PHEs), data are collected and generated from a variety of activities and sources, including but not limited to national public health programs, research and community-based activities. It is critical that these data are rapidly shared in order to facilitate the public health response, epidemic preparedness, as well as research during and after the epidemic. Nonetheless, collecting and sharing data during PHEs can be challenging, especially where there are limited resources for public health and research-related activities. In a symposium that brought together different stakeholders that were involved in the 2013-2016 Ebola outbreaks in West Africa, meeting attendees shared their perspectives on the values and management of data during PHEs in sub-Saharan Africa. Key factors that could inform and facilitate data management during PHEs in sub-Saharan Africa were discussed, including using data to inform policy decisions and healthcare; a coordinated data collection and management scheme; identifying incentives for data sharing; and equitable data  governance mechanism that emphasise principles of reciprocity, transparency and accountability rather that trust between stakeholders or collaborators. Empirical studies are required to explore how these principles could inform best practices for data management and governance during PHE in sub-Saharan Africa.</ns3:p

Perspectives of different stakeholders on data use and management in public health emergencies in sub-Saharan Africa: a meeting report

During public health emergencies (PHEs), data are collected and generated from a variety of activities and sources, including but not limited to national public health programs, research and community-based activities. It is critical that these data are rapidly shared in order to facilitate the public health response, epidemic preparedness, as well as research during and after the epidemic. Nonetheless, collecting and sharing data during PHEs can be challenging, especially where there are limited resources for public health and research-related activities. In a symposium that brought together different stakeholders that were involved in the 2013-2016 Ebola outbreaks in West Africa, meeting attendees shared their perspectives on the values and management of data during PHEs in sub-Saharan Africa. Key factors that could inform and facilitate data management during PHEs in sub-Saharan Africa were discussed, including using data to inform policy decisions and healthcare; a coordinated data collection and management scheme; identifying incentives for data sharing; and equitable data  governance mechanism that emphasise principles of reciprocity, transparency and accountability rather that trust between stakeholders or collaborators. Empirical studies are required to explore how these principles could inform best practices for data management and governance during PHE in sub-Saharan Africa.</ns3:p

NIHR Global Health Research Group on Vaccines for vulnerable people in Africa (VAnguard): Concept and Launch event report [version 2; peer review: 2 approved]

Background Vaccination is an important public health intervention, but not everyone benefits equally. Biological, social and structural factors render some communities vulnerable and unable to secure optimal health benefits from vaccination programmes. This drives health inequity and undermines wider vaccine impact by allowing the persistence of non-immune communities as foci for recurrent disease outbreaks. The NIHR Global Health Research Group on Vaccines for vulnerable people in Africa (VAnguard) aims to understand how biological, social, and structural factors interact to impair vaccine impact in vulnerable African communities. Methods The VAnguard project will be implemented through three thematic work packages (1-3) and four cross-cutting work packages (4-7). Work package 1 will investigate the biological drivers and mechanisms of population differences in vaccine responses. Work package 2 will support the understanding of how structural, social and biological determinants of vaccine response interrelate to determine vaccine impact. Work package 3 will synthesise data and lead analyses to develop, model and test community-based integrated strategies to optimise vaccine access, uptake and effectiveness. Work package 4 will plan and implement field investigations (community survey and qualitative studies (with support of work package 2) to explore structural, social & biological determinants impairing vaccine impact. Work package 5 will collaborate with work packages 1-4, to engage communities in designing interventions that aim to directly optimise vaccine impact through a process of co-learning and co-creation between them and the researchers. Work package 6 will build capacity for, and a culture of, consultative, collaborative multidisciplinary vaccine research in East Africa. Work package 7 will support the overall project management and governance. Following the project inception on the 1st of September 2022, project launch was held in November 2022. Conclusion Results from this project will contribute to the development of integrated strategies that will optimise vaccine benefits and drive health equity

A network of empirical ethics teams embedded in research programmes across multiple sites: opportunities and challenges in contributing to COVID-19 research and responses

Covid-19 continues to teach the global community important lessons about preparedness for research and effective action to respond to emerging health threats.  We share the COVID-19 experiences of a pre-existing cross-site ethics network-the Global Health Bioethics Network-which brings together researchers and practitioners from Africa, Europe, and South east Asia. We describe the network and its members and activities, and the work-related opportunities and challenges we faced over a one-year period during the pandemic. We highlight the value of having strong and long-term empirical ethics networks embedded across diverse research institutions to be able to: 1) identify and share relevant ethics challenges and research questions and ways of ’doing research’; 2) work with key stakeholders to identify appropriate ways to contribute to the emerging health issue response – e.g. through ethics oversight, community engagement, and advisory roles at different levels; and 3) learn from each other and from diverse contexts to advocate for positive change at multiple levels. It is our view that being both embedded and long term offers particular opportunities in terms of deep institutional and contextual knowledge and relationships with and access to a wide range of stakeholders in place. Being networked offers opportunities to draw upon a wide range of expertise and perspectives operating at multiple levels, and to bring together internal and external perspectives (i.e. different positionalities). Long term funding means that the people and resources are in place and ready to respond in a timely way. However, many tensions and challenges remain, including difficulties in negotiating power and politics regarding roles that researchers and research institutions play in an emergency, and the position of empirical ethics activities in programmes of research more specifically. We discuss some of these tensions and challenges, and consider the implications for our own and similar networks in future

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead