Advancing Data Science in African Healthcare: A Focus on Ethical Governance

By Dr. Sampath LonkaReviewed by Susha Cheriyedath, M.Sc.Oct 3 2023

In a recent paper published in the journal Nature Communications, researchers investigated ongoing initiatives propelled by African governments, institutions, international funders, and research collaborations to establish ethical frameworks, fostering progress in capacity development.

Background

Data science is causing a potential revolution in healthcare and research. It promises groundbreaking interventions and strategies by efficiently analyzing vast datasets from various sources, such as healthcare systems, smartphones, social media, and wearable devices. Applications include bio-preparedness for disease outbreaks, disease mapping using Geographic Information Systems (GIS), progress monitoring towards the United Nations’ Sustainable Development Goals (SDG), and more.

Data science health research extends these methods to collect, process, and analyze health-related data for actionable insights. It integrates omics technologies for understanding biological mechanisms, precision medicine from electronic health records, and advanced medical image analysis. In public health, data science improves early disease detection and response using social media data and novel technologies.

Africa, with its growing population, stands to gain significantly from data science in healthcare, overcoming healthcare challenges. However, there is a need to address the underrepresentation of African populations in data science models. African researchers are already using data science, but there is a call for context-specific applications to benefit the continent.

Data science health research in Africa

In Africa, multiple initiatives have been implemented to enhance the data science health research infrastructure. These efforts include capacity building, training, conferences, and international collaborations. In 2022, the United States (US) National Institutes of Health (NIH) Common Fund granted $74.5 million for the "Harnessing Data Science for Health Discovery and Innovation in Africa (DS-I Africa)" program.

DS-I Africa encompasses various projects, including a Coordinating Center, an Open Data Science platform, training programs, legal, ethical, and social implications projects, and research projects. This initiative builds upon the foundation laid by programs such as the NIH-funded Human Heredity and Health in Africa (H3Africa) program, which fostered collaborations, developed genomics research infrastructure, and established governance and ethics policies. Additionally, data science training programs and conferences in Africa help bridge the data science gap and enrich global resources for health research.

Framework for data science health research in Africa

A comprehensive framework for governing data science health research in Africa is a critical need. Unlike other fields, health research already possesses established ethical governance structures. Investments from organizations such as the NIH, Wellcome Trust, the European-Developing Countries Clinical Trials Partnership (EDCTP), and African institutions and governments have significantly bolstered African health research ethics infrastructure. However, challenges persist, such as concerns about informed consent quality, data ownership, sharing, benefit-sharing, privacy, and weak governance.

Recent examples, including issues during Coronavirus (COVID-19) research and unauthorized deoxyribonucleic acid (DNA) sample use, underscore these challenges. Research consortia such as H3Africa have developed policies on data sharing, collaborations, and African leadership. They also provide training and protection for African researchers. The evolving nature of data science methods and complex algorithms, coupled with uncertain consent procedures, further complicates ethical oversight.

Collaboration between ethics committees or centralization may be needed to address these challenges. National health research ethics committees can be key in overseeing complex data science health research within their boundaries, streamlining the review process, and improving efficiency. However, they too face resource and funding challenges.

Strengthening data science health research and ethics

Enhancing institutional and national health research ethics and governance infrastructure in Africa is imperative. Despite prior investments, the capacity for ethical oversight in African health research remains under-resourced and vulnerable. The impending influx of data science health research projects further exacerbates this challenge. African governments and local institutions are primarily responsible for bolstering national and institutional health research ethics infrastructure. Research sponsors should tie progress in data science health research ethics capacity to new funding, spurring institutional responses.

Engaging research ethicists with local research and data science communities is crucial for developing ethical governance frameworks aligning with research ethics oversight structures. African governments should develop culturally appropriate laws, guidelines, and regulations for data science health research. Research and training consortia are pivotal in experimenting with ethical regulation strategies for data science health research. Governments must maintain public trust and support through accountability to ensure continued public engagement.

To address digital inequity, African countries must increase the volume and diversity of their datasets. Investment in healthcare systems, electronic health records, disease registries, and digital systems is crucial. Frameworks for digital health equity can guide interventions to enhance digital health data generation in Africa. Large-scale efforts are needed to bridge the gap in data volume between Africa and high-income countries. Addressing algorithmic bias, data colonization, and extractive research in data science health research is vital. Strategies to mitigate these biases include diversifying data scientists, implementing guidelines and policies, and training data scientists in health research ethics.

Conclusion

In summary, researchers discussed the growing importance of data science in healthcare and research in Africa, emphasizing the need for ethical governance. They highlighted ongoing initiatives, investments, and challenges, such as data ownership and consent issues. The study underscores the significance of collaboration and investment in ethical oversight for impactful research in Africa.