Ethical issues in the collection, analysis and dissemination of DHS data in sub-Saharan Africa

Jacob A. Adetunji, U.S. Agency for International Development (USAID)
James Shelton, U.S. Agency for International Development (USAID)

When the Demographic and Health Surveys (DHS) program collected data primarily through structured interviews with consenting adults, very few ethical issues arose. However, in recent years, increased demand for detailed data needed for monitoring and evaluating health programs such a HIV and malaria has led to the collection of biomarkers and geographical information systems data. The collection and storage of these new data required that attention be paid to ethical issues of informed consent, confidentiality, and privacy when working with sensitive biomarker data, especially when making provision for follow-up for those who test positive to easily treatable conditions. This paper discusses these ethical issues as they relate to the collection of serum samples for HIV, syphilis, and anemia testing and the handling of geo-referenced data. The procedure for maintaining strong ethical standards under the DHS is discussed. Thorny questions with which the program grapples are also presented.