Okukkera Ng'omuzungu(lost in translation): Understanding the social value of global health research for HIV/AIDS research participants in Uganda

2010 ◽  
Vol 5 (2) ◽  
pp. 164-180 ◽  
Author(s):  
K. Stewart ◽  
N. Sewankambo
Keyword(s):  
Global Health ◽  
Health Research ◽  
Social Value ◽  
Global Health Research ◽  
Research Participants ◽  
The Social ◽  
Aids Research ◽  
Lost In Translation ◽  
Hiv Aids

scholarly journals How to navigate the application of ethics norms in global health research: reflections based on qualitative research conducted with people with disabilities in Uganda

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Muriel Mac-Seing ◽  
Louise Ringuette ◽  
Kate Zinszer ◽  
Béatrice Godard ◽  
Christina Zarowsky
Keyword(s):  
Qualitative Research ◽  
Data Collection ◽  
Global Health ◽  
Research Ethics ◽  
Health Research ◽  
People With Disabilities ◽  
Global Health Research ◽  
Research Participants ◽  
Research Ethics Boards ◽  
Study Participants

Abstract Background As Canadian global health researchers who conducted a qualitative study with adults with and without disabilities in Uganda, we obtained ethics approval from four institutional research ethics boards (two in Canada and two in Uganda). In Canada, research ethics boards and researchers follow the research ethics norms of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2), and the National Guidelines for Research Involving Humans as Research Participants of Uganda (NGRU) in Uganda. The preparation and implementation of this qualitative research raised specific ethical issues related to research participant privacy and the importance of availability and management of financial resources. Main body Our field experience highlights three main issues for reflection. First, we demonstrate that, in a global health research context, methodological and logistic adjustments were necessary throughout the research implementation process to ensure the protection of study participants’ privacy, especially that of people with disabilities, despite having followed the prescribed Canadian and Ugandan ethics norms. Data collection and management plans were adapted iteratively based on local realities. Second, securing financial support as a key aspect of financial management was critical to ensure privacy through disability-sensitive data collection strategies. Without adequate funding, the recruitment of research participants based on disability type, sex, and region or the hiring of local sign language interpreters would not have been possible. Third, although the TCPS2 and NGRU underscore the significance of participants’ privacy, none of these normative documents clearly express this issue in the context of global health research and disability, nor broadly discuss the ethical issue related to financial availability and management. Conclusions Conducting research in resource limited settings and with study participants with different needs calls for a nuanced and respectful implementation of research ethics in a global health context. We recommend a greater integration in both the TCPS2 and NGRU of global health research, disability, and responsible conduct of research. This integration should also be accompanied by adequate training which can further guide researchers, be they senior, junior, or students, and funding agencies.

scholarly journals The ethics of data sharing and biobanking in health research

2020 ◽  
Vol 5 ◽  
pp. 270
Author(s):  
Susan Bull ◽  
Niresh Bhagwandin
Keyword(s):  
South Africa ◽  
Global Health ◽  
Case Studies ◽  
Data Sharing ◽  
Health Research ◽  
Global Health Research ◽  
Ethical Challenges ◽  
Global Forum ◽  
Research Participants ◽  
Equitable Sharing

The importance of data sharing and biobanking are increasingly being recognised in global health research. Such practices are perceived to have the potential to promote science by maximising the utility of data and samples. However, they also raise ethical challenges which can be exacerbated by existing disparities in power, infrastructure and capacity. The Global Forum on Bioethics in Research (GFBR) convened in Stellenbosch, South Africa in November 2018, to explore the ethics of data sharing and biobanking in health research. Ninety-five participants from 35 countries drew on case studies and their experiences with sharing in their discussion of issues relating to respecting research participants and communities, promoting equitable sharing, and international and national approaches to governing data sharing and biobanking. In this editorial we will briefly review insights relating to each of these three themes.

scholarly journals Sharing power in global health research: an ethical toolkit for designing priority-setting processes that meaningfully include communities

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Bridget Pratt
Keyword(s):  
Global Health ◽  
Priority Setting ◽  
Health Research ◽  
Reflective Equilibrium ◽  
Empirical Work ◽  
The Philippines ◽  
Project Planning ◽  
Global Health Research ◽  
Research Priority ◽  
Health Research Priority Setting

AbstractTo promote social justice and equity, global health research should meaningfully engage communities throughout projects: from setting agendas onwards. But communities, especially those that are considered disadvantaged or marginalised, rarely have a say in the priorities of the research projects that aim to help them. So far, there remains limited ethical guidance and resources on how to share power with communities in health research priority-setting. This paper presents an “ethical toolkit” for academic researchers and their community partners to use to design priority-setting processes that meaningfully include the communities impacted by their projects. An empirical reflective equilibrium approach was employed to develop the toolkit. Conceptual work articulated ethical considerations related to sharing power in g0l0o0bal health research priority-setting, developed guidance on how to address them, and created an initial version of the toolkit. Empirical work (51 in-depth interviews, 1 focus group, 2 case studies in India and the Philippines) conducted in 2018 and 2019 then tested those findings against information from global health research practice. The final ethical toolkit is a reflective project planning aid. It consists of 4 worksheets (Worksheet 1- Selecting Partners; Worksheet 2- Deciding to Partner; Worksheet 3- Deciding to Engage with the Wider Community; Worksheet 4- Designing Priority-setting) and a Companion Document detailing how to use them. Reflecting on and discussing the questions in Worksheets 1 to 4 before priority-setting will help deliver priority-setting processes that share power with communities and projects with research topics and questions that more accurately reflect their healthcare and system needs.

scholarly journals Bridging research integrity and global health epidemiology (BRIDGE) statement: guidelines for good epidemiological practice

2020 ◽  
Vol 5 (10) ◽  
pp. e003236
Author(s):  
Sandra Alba ◽  
Kristien Verdonck ◽  
Annick Lenglet ◽  
Susan F Rumisha ◽  
Martijn Wienia ◽  
...  
Keyword(s):  
Global Health ◽  
Health Research ◽  
Research Integrity ◽  
Epidemiological Studies ◽  
Global Health Research ◽  
Face To Face ◽  
Protocol Development ◽  
Development Data ◽  
Collection Data ◽  
Mutual Accountability

BackgroundResearch integrity and research fairness have gained considerable momentum in the past decade and have direct implications for global health epidemiology. Research integrity and research fairness principles should be equally nurtured to produce high-quality impactful research—but bridging the two can lead to practical and ethical dilemmas. In order to provide practical guidance to researchers and epidemiologist, we set out to develop good epidemiological practice guidelines specifically for global health epidemiology, targeted at stakeholders involved in the commissioning, conduct, appraisal and publication of global health research.MethodsWe developed preliminary guidelines based on targeted online searches on existing best practices for epidemiological studies and sought to align these with key elements of global health research and research fairness. We validated these guidelines through a Delphi consultation study, to reach a consensus among a wide representation of stakeholders.ResultsA total of 45 experts provided input on the first round of e-Delphi consultation and 40 in the second. Respondents covered a range of organisations (including for example academia, ministries, NGOs, research funders, technical agencies) involved in epidemiological studies from countries around the world (Europe: 19; Africa: 10; North America: 7; Asia: 5; South-America: 3 Australia: 1). A selection of eight experts were invited for a face-to-face meeting. The final guidelines consist of a set of 6 standards and 42 accompanying criteria including study preparation, protocol development, data collection, data management, data analysis, dissemination and communication.ConclusionWhile guidelines will not by themselves guard global health from questionable and unfair research practices, they are certainly part of a concerted effort to ensure not only mutual accountability between individual researchers, their institutions and their funders but most importantly their joint accountability towards the communities they study and society at large.

Researchers slam UK cuts to global health research

The Lancet ◽  
2021 ◽  
Vol 397 (10280) ◽  
pp. 1168-1170 ◽  
Author(s):  
Jacqui Thornton
Keyword(s):  
Global Health ◽  
Health Research ◽  
Global Health Research

scholarly journals Stuck in the middle: a systematic review of authorship in collaborative health research in Africa, 2014–2016

2019 ◽  
Vol 4 (5) ◽  
pp. e001853 ◽  
Author(s):  
Bethany L Hedt-Gauthier ◽  
Herve Momo Jeufack ◽  
Nicholas H Neufeld ◽  
Atalay Alem ◽  
Sara Sauer ◽  
...  
Keyword(s):  
Global Health ◽  
Health Research ◽  
African Country ◽  
High Income ◽  
Sub Saharan Africa ◽  
Income Country ◽  
High Income Country ◽  
Sensitivity Analyses ◽  
Global Health Research ◽  
The Usa

BackgroundCollaborations are often a cornerstone of global health research. Power dynamics can shape if and how local researchers are included in manuscripts. This article investigates how international collaborations affect the representation of local authors, overall and in first and last author positions, in African health research.MethodsWe extracted papers on ‘health’ in sub-Saharan Africa indexed in PubMed and published between 2014 and 2016. The author’s affiliation was used to classify the individual as from the country of the paper’s focus, from another African country, from Europe, from the USA/Canada or from another locale. Authors classified as from the USA/Canada were further subclassified if the author was from a top US university. In primary analyses, individuals with multiple affiliations were presumed to be from a high-income country if they contained any affiliation from a high-income country. In sensitivity analyses, these individuals were presumed to be from an African country if they contained any affiliation an African country. Differences in paper characteristics and representation of local coauthors are compared by collaborative type using χ² tests.ResultsOf the 7100 articles identified, 68.3% included collaborators from the USA, Canada, Europe and/or another African country. 54.0% of all 43 429 authors and 52.9% of 7100 first authors were from the country of the paper’s focus. Representation dropped if any collaborators were from USA, Canada or Europe with the lowest representation for collaborators from top US universities—for these papers, 41.3% of all authors and 23.0% of first authors were from country of paper’s focus. Local representation was highest with collaborators from another African country. 13.5% of all papers had no local coauthors.DiscussionIndividuals, institutions and funders from high-income countries should challenge persistent power differentials in global health research. South-South collaborations can help African researchers expand technical expertise while maintaining presence on the resulting research.

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