New models of public health research: optimizing ethics in research using public health data in resource limited countries

Progress in public health retains the greatest potential to advance global health and innovation through research. The research arena has revolutionized through many methodological changes: changing research environments require changes to ethical practices. This is especially crucial in contexts where ethical growths are developmental. The health and demographic surveillance system (HDSS) is a public health model in the Global South which provides critical data for evidence generation. The model is common in countries where data availability for public health and for research is otherwise limited because of inadequate resources. Resource limitations and the general dwindling of global funding internationally require strategic alignment of health goals with cost effective research methodologies like research using public health data (RUPD). RUPD has therefore become a key tool in developing countries’ research progress towards meeting global health goals like the Sustainable Development Goals (SDGs). Africa is poised to meet the SDGs with RUPD as an efficient option for increasing scientific productivity without tallying up cost. The role of RUPD in the continent’s public health agenda is established. Like every new endeavor however, RUPD raises its own set of features, changes, and challenges for which there exists a comparatively narrower frame of opportunities for ethical practice than in traditional research. The goal of this project was primarily to evaluate whether and how to optimize or make the most possible good of traditional research ethics principles in RUPD. Optimization of ethical principles would offer the best protection of the interests and wellbeing of RUPD populations. This empirical study adopts a critical applied ethics approach, comprising a quantitative survey and qualitative interviews involving practitioners knowledgeable about RUPD in Ethiopia, Ghana, and Tanzania. The main findings are that the HDSS model offers a fertile environment for optimizing ethics in RUPD beyond the commonly required practice of research ethics review and protection of confidentiality. Optimizing the longstanding ethical principles that have brought major successes to the biomedical research arena is desirable for RUPD populations, science, and for the general development of ethics in the South. This study shows that doing so is possible without necessarily sacrificing values of comparable worth. Using critical applied ethics also permitted consideration to emerging global issues of important implications for the future of RUPD. Therefore, this thesis secondarily presents empirical views encapsulating both the affirmation and skepticism about public health data sharing from Africa. Such views are largely absent in ongoing data sharing deliberations and in the literature. They highlight issues affecting the under-resourced data-producing scientist and the new challenges in data sharing. Of additional interest to this study was the arrival of the new CIOMS Guidelines this past month in December 2016. It is better suited to RUPD than previous versions, but still leaves room for more to be done towards ethics in RUPD.