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Ethics of Data Science in Global Health Research

There is immense global inequity in where health research happens, who leads the research, and who benefits from the evidence. This may be traced back to the colonial roots of global health research. In the fifteenth and sixteenth centuries, Europeans were travelling to warmer countries that had harsher climates and new diseases. This gave rise to the field of “tropical medicine”, where the focus was protecting the health of colonizers in these new climates. Such a structure formed the basis of perpetuating colonial norms that prioritized the health of Europeans. Fortunately, the landscape is slowly shifting in focus to equity and justice, and building research capacity in previously colonized countries.

Current ethical issues and implications of global health research and data management are rooted in its colonial history

Such issues can be characterised by language adoption: for example, the current publication landscape is biased towards English-language publications. Funding is another example, with research-intensive countries pushing an agenda and research interests over actual health priorities in low- and middle-income countries (LMICs). There are also ethical implications specific to data science in global health research, including those related to data collection, use and sharing. The Global Health Network’s and partners’ data science initiatives aim to address ethical issues in particular, and develop resources, by helping facilitate local data science capacity building. This webpage provides a hub for such resources.

Basic Ethical Principles

There are some basic ethical principles that can help guide global health researchers to facilitate good research practice, particularly when it comes to data-driven research. Often, these principles are laid out in what’s called an “Ethics and Governance Framework”. There are many examples of these types of frameworks. One example is the Ethics and Governance Framework of the International COVID-19 Data Alliance (ICODA). The basic ethical principle it outlines are described below.

DELIVER PATIENT BENEFIT: use data effectively in high-quality robust research and promote reporting of results
FOSTER EQUITY: support LMIC-led research and recognize contribution of who produces the data.
RESPECT THE PATIENTS AND REESEARCH PARTICIPANTS WHO CONTRIBUTE DATA: respect the data sharing preferences of patients and maintain community engagement throughout the project
PROTECT PRIVACY: ensure robust data security and manage who has access to it.
PROVIDE RESPONSIBLE STEWARDSHIP: maintain transparency across all research activities.

Introductory Webinar

Ethics of Data Science in Global Health Research: Regional Case Studies and Practical Examples

The Global Health Data Science Technical Working group, with collaborators from Africa, Asia and Latin America, convened a webinar to explore ethical issues, related to global health research and data collection and sharing practices, in particular in LMICs. This webinar aimed to introduce some relevant case studies of ethical issues related to the global health publication landscape and discuss practical examples of how to address ethical issues in global health research, with a focus on data science, at the regional level.

Chair: Professor Julio Canario Guzman, Founder of Fundación Etikos, Dominican Republic

Speakers

Luciana Monteiro-Krebs, Data Curator at the Hub Fiocruz TGHN, Fiocruz, Brazil
Aashna Uppal, PhD Student at The Global Health Network, University of Oxford, United Kingdom
Daniella Morelli, Institute for Clinical Effectiveness and Health Policy (IECS)
Anthony Afum-Adjei Awuah, Postdoctoral Research Fellow at the Global Health and Infectious Diseases Research Group, Kumasi Centre for Collaborative Research in Tropical Medicine; Lecturer at the Department of Molecular Medicine, School of Medicine and Dentistry, KNUST, Ghana
Dr. Aliya Naheed - Scientist, Non-Communicable Disease; Nutrition Research Division, icddr,b; Regional lead, The Global Health Network Asia

Some resources to get your learning started:

Please see a selection of relevant courses to support your learning on this topic.

COURSES RELATED TO RESEARCH ETHICS

Introduction to Informed Consent: https://globalhealthtrainingcentre.tghn.org/introduction-informed-consent/
Essential Elements of Ethics: https://globalhealthtrainingcentre.tghn.org/essential-elements-ethics/
Ethics and Best Practices in Sharing Individual-level Research Data: https://globalhealthtrainingcentre.tghn.org/ethics-and-best-practices-sharing-individual-level-data-clinical-and-public-health-research/

COURSES RELATED TO HEALTH DATA & RESEARCH PRACTICE

Data Management: https://edctpknowledgehub.tghn.org/Dat-man-por/getting-started/
Data Management with ALERRT: https://alerrt.tghn.org/elearning/data-management/data-management-ict-aspects/
Introduction to Data Management for Clinical Research Studies: https://globalhealthtrainingcentre.tghn.org/introduction-data-management-clinical-research-studies/
Data Sharing Toolkit: https://edctpknowledgehub.tghn.org/data-sharing-toolkit/
Data Sharing Course: https://globalhealthtrainingcentre.tghn.org/data-sharing/
What is Open Science?: https://globalhealthtrainingcentre.tghn.org/what-open-science/
Good Clinical Research Practice: https://globalhealthtrainingcentre.tghn.org/ich-good-clinical-practice/

RELEVANT GUIDELINES AND ETHICS FRAMEWORKS

STANDING Together project: https://www.datadiversity.org
CARE principles: https://www.gida-global.org/care#
ICODA Ethics and Governance Framework: https://icoda-research.org/wp-content/uploads/2021/06/Ethics-and-Governance-framework-May-2021-v1.1.pdf