Addressing Ethical Issues for Health and Demographic Surveillance Systems in Sub-Saharan Africa

Hinga, Alex Nginyo (2020). Addressing Ethical Issues for Health and Demographic Surveillance Systems in Sub-Saharan Africa. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.000113f1

Abstract

In this thesis, I discuss ethical issues for health and demographic surveillance systems (HDSS). HDSS involve the longitudinal monitoring of vital events, such as births and deaths, in a relatively small, geographically defined population, without a specified end date. Methodologically and in their aims, HDSS occupy a grey area between research, health care and public health. Despite involving millions of people in sub-Saharan Africa and other settings that face significant health and socioeconomic challenges, HDSS have received little attention in the empirical ethics literature and guidelines.

To address the empirical and normative gaps in HDSS ethics, I conducted a qualitative study based on a case study design. This included three interlinked phases; 1) formative research in six HDSS across sub-Saharan Africa to map out key ethical issues 2) a case study of two HDSS in Kenya to explore ethical issues in depth, 3) an assessment of the wider relevance of the case study findings. I explored the views and experiences of HDSS research and community stakeholders through interviews, observations, document reviews and focus group discussions. I drew on this empirical data, and the wider bioethics and social science literature to develop normative conclusions on HDSS ethics.

Overall, the benefits and burdens of HDSS appear disproportionately distributed among stakeholders. Verbal autopsy respondents and interviewers bear most of the severe burdens in HDSS, with significant emotional and moral distress respectively. HDSS residents are also exposed to a wide range of risks (such as to privacy) regularly over a long timescale. Although HDSS have contributed to scientific publications which could inform policy and practice, this potential social value, as well as more immediate local benefits, are not well-articulated or demonstrated in practice. I make recommendations to minimise burdens and enhance the social value of HDSS in sub-Saharan Africa.