ABSTRACT

The objective of my study is to identify ethical issues in Health and Demographic Surveillance Systems (HDSS) in sub-Saharan Africa (SSA) and to make recommendations on how these ethical issues should be responded to. A HDSS longitudinally monitor births, deaths and migrations in a geographically defined population. There are 53 HDSS sites located in low and middle income countries across Africa, Asia and Oceania. The majority of these HDSS sites are in sub-Saharan Africa. The Verbal Autopsy, which involves conducting interviews with the bereaved to find out the probable cause of death, is a key component of a HDSSHDSS sites are seen as interim measures for providing population-level data in countries without well-functioning civil registration and vital statistics systems.

Methodologically, HDSS are indistinctly positioned between research, health care and public health practice. Secondly, they involve long-term follow up of entire populations in settings of multidimensional poverty. In addition, HDSS have received little attention in the ethics literature and guidelines. Therefore, there is a lack of clarity on what the ethical issues in HDSS are and how they should be responded to. My study will contribute to filling this gap. I am using a case study research design. Participants include HDSS research and community stakeholders. Data collection methods include individual in-depth interviews, observation, focus group discussions and document review.