Global health research partnerships are increasingly taking the form of consortia of institutions from high-income countries and low- and middle-income countries that undertake programs of research. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Although such consortia typically aim to reduce health disparities between and within countries, what is required for them to do so has not been clearly defined. This article takes a (...) conceptual approach to explore how the governance of transnational global health research consortia should be structured to advance health equity. To do so, it applies an account called shared health governance to derive procedural and substantive guidance. A checklist based on this guidance is proposed to assist research consortia determine where their governance practices strongly promote equity and where they may fall short. (shrink)

Thus far, little work in bioethics has specifically focused on global health research priority-setting. Yet features of global health research priority-setting raise ethical considerations and concerns related to health justice. For example, such processes are often exclusively disease-driven, meaning they rely heavily on burden of disease considerations. They, therefore, tend to undervalue non-biomedical research topics, which have been identified as essential to helping reduce health disparities. In recognition of these ethical concerns and the limited scholarship and dialogue addressing them, we (...) convened an international workshop in September 2015. The workshop aimed to initiate discussion on the appropriate relationship between global and national levels of health research priority-setting and to begin exploring what might be ethically required for priority-setting at each of those levels. This paper comprises our reflections following the workshop. Its main objective is to launch a research agenda for the ethics of global health research priority-setting. We identify three domains of global health research priority-setting—scope, underlying values and substantive requirements, and procedural considerations. For each domain, specific research questions are highlighted and why they need to be explored is explained. Some preliminary thoughts and normative arguments as to how the research questions might be answered are also offered. For example, we provide initial ideas about the appropriate relationship between different priority-setting levels and what values and substantive considerations should guide or underpin global health research priority-setting as a matter of justice. We anticipate that framing a new research agenda for the ethics of global health research priority-setting will spur ethicists, researchers, and policymakers to refocus their efforts on developing more rigorous and ethically sound approaches to priority-setting. (shrink)

Journals have been described as “duty bearers” of upholding fundamental ethical principles that are essential for maintaining the ethical integrity of newly generated and disseminated knowledge. To play our part, we evaluated diversity and inclusion in the leadership and management of global and international health journals. We developed Journal Diversity Index (JDI) to measure three parameters of diversity and representation (gender, geographic, socioeconomic status). Relevant information regarding editorial board members of systematically screened journals was sequentially extracted and job titles were (...) categorized into five editorial roles. Chi-squared test was utilized to study associations between gender and geographic distribution of editors along with the Medline indexing of the journal and its impact factor. Out of 43 journals included, 62.7% were published from two high-income countries. Women comprised 44% of the total editors. Among all the editorial board members, we did not find any information suggesting the representation of non-binary and transgender individuals. Furthermore, 68.2% of editors were based in high-income countries with 67.3% of the editors belonging to the Global North. This disparity in geographic region and socioeconomic level was observed across all five editorial roles. Among all women editors, more than 70% worked in non-Medline and non-impact factor journals. Only two journals scored “excellent” on JDI. Despite the continuous evolution of the definition of global health ethics, marginalized individuals, and their perspectives remain underrepresented in this field. Thus, we call for swift action regarding the decentralization and redistribution of global and international health journal editorial boards. (shrink)

The anticipation of ethical issues that may arise with the clinical use of genomic technologies is crucial to envision their future implementation in a manner sensitive to local contexts. Yet, populations in low- and middle-income countries are underrepresented in studies that aim to explore stakeholders’ perspectives on the use of such technologies. Within the framework of a research project entitled “Personalized medicine in the treatment of epilepsy”, we sought to increase inclusiveness by widening the reach of our survey, inviting neurologists (...) from around the world to share their views and practices regarding the use of whole-genome sequencing in clinical neurology and its associated ethics. We discuss herein the compelling scientific and ethical reasons that led us to attempt to recruit neurologists worldwide, despite the lack, in many low- or middle-income countries, of access to genomic technologies. Recruitment procedures and their results are presented and discussed, as well as the barriers we faced. We conclude that inclusive recruitment remains a challenging, albeit necessary and legitimate, endeavour. (shrink)