The use of data science methods in health research: legal, ethical, and social implications for sub–Saharan Africa (V)
Oluchi Maduka1, Center For Bioethics And Research Ibadan 1Center For Bioethics And Research, Ibadan, Oyo, Nigeria
Abstract
Introduction
Data science health research (DSHR) is poised to reduce Africa’s disease burden; however, it raises important ELSI challenges for SSA due to disparities in health research capacity and the slow pace of regulatory development. Given the novelty and ubiquitous influence of data science in health research, this study aims to investigate existing DSHR governance frameworks in SSA to see if they provide adequate safeguards to prevent harm resulting from data collection and use.
Methods
Information on regulatory measures came from official documents (laws, regulations) from 10 countries in the DS-I Africa consortium, and 10 other countries believed to have made investments in research ethics and data protection regulations. The effectiveness of the regulations was assessed using the WHO guidance on Ethics and Governance of AI for Health as well as the EU-GDPR. Data were subjected to content analysis on several thematic areas.
Result
16 of the 20 countries have different legislations governing the lawful use of data while human subject research is governed by a variety of regulations in each of the 20 countries. Only a few, however, address discrimination and bias. In contrast to the EU-GDPR, the governance frameworks at the regional and sub-regional levels are not international obligations. There are regulatory gaps in the use of publicly available information, and mental data, as well as the enforcement of remedies for harms caused by data science methods.
Conclusion
SSA needs to apply cutting-edge data science techniques to revolutionize health research. However, DSHR must adhere to accepted ethical standards for health research. Data science researchers must collaborate with the ethics committee to ensure that novel ELSI issues from DSHR are addressed.
Keywords: Data science, ELSI, health research, governance, sub-Saharan Africa,
Biography
My long-term research interests include focusing on the intersection between law/ethics and the application of cutting-edge technological innovations in human subject research. My academic training has provided me with a solid legal foundation. I completed my doctoral studies in 2021 and received a PhD. in law from the University of Ibadan in Nigeria. I am currently a postdoctoral researcher on a National Institutes of Health (NIH) funded project (Bridging Gaps in the Ethical, Legal, and Social Implications of Data Science Health Research in Nigeria) under the Data Science for Health Discovery and Innovation in Africa consortium. My research is addressing additional questions on the use of Artificial Intelligence, machine learning, big data, and high-performance computing in human subject research. In 2022, I participated in the NIH sponsored paper collection series on the state of data science for health research in Africa. My team is investigating the governance challenges to accessing and using health data for health research in Africa. I have presented papers in several international and local conferences. Recently, I co-authored a paper that was submitted to the Journal of Law and Biosciences in which we examined the traditional approaches to gene editing governance in Nigeria.