Ethical Issues for Verbal Autopsy in the Context of Health and Demographic Surveillance Systems

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 HDSS. HDSS 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.