Ethical Issues Surrounding Data Collection under the Demographic and Health Surveys Program

Jacob Adetunji, U.S. Agency for International Development (USAID)
Sarah Pacque-Margolis, U.S. Agency for International Development (USAID)
James Shelton, U.S. Agency for International Development (USAID)

In survey data collection programs that are primarily based on structured interviews with consenting adults, few or no complex ethical problems arise. However, in recent years, increasing demand for more detailed data needed for monitoring and evaluating population and health programs has led to the collection of biomarkers and geographical information systems data. The collection and storage of these new data have raised issues such as how to address consent, ensuring privacy when working with linked and unlinked data, and making opportunities for follow-up counseling and/or treatment of the survey population when appropriate. This paper discusses these and similar ethical dilemmas encountered in the field, particularly as they relate to collection of serum samples for HIV, syphilis, and anemia testing, for vitamin A screening and the handling of geo-referenced data under MEASURE DHS+. The implications of the results for future collection of survey data in developing countries are also discussed.