Abstract

Verbal autopsy presents the opportunity to understand the disease burden in many low-income countries where vital registration systems are underdeveloped and most deaths occur in the community. Advances in technology have led to the development of software that can provide probable cause of death information in real time, and research considering the ethical implications of these advances is necessary to inform policy. Our research explores these ethical issues in rural Nepal using a public health ethics framework. We considered the burdens and benefits of VA and giving cause of death information to families of the deceased through qualitative research with VA interviewers, community members, national policy stakeholders and international academics. Burdens can be experienced differently, and it is important to balance the emotional burden of VA with utilization of the data to inform planning and increased access to health services. The training, support and supervision of VA interviewers should be prioritized if VA is taken to scale. Initial and ongoing community engagement is recommended in addition to engaging ethical, legal, health and policy personnel in developing protocols and systems. Integrating rigorous research while cautiously moving forward is recommended to ensure systems and responses to concerns are relevant to contexts.