Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
Most countries in Africa lack effective civil registration systems. This means that many people in these countries live and die without important data about their lives being collected. In the absence of these data, the planning and implementation of various health and social programmes can be difficult.
A Health and Demographic Surveillance System longitudinally monitors births, deaths, pregnancy outcomes, migrations and other vital events in a geographically defined population. There are about 40 HDSS sites in sub-Saharan Africa.
Methodologically, HDSS occupy a grey area between research, health care and public health practice. In addition, there is paucity of empirical research and guidelines on HDSS ethics. Therefore, it’s not clear how ethical issues for HDSS should be addressed.
The main objective of my GHBN research project is to describe HDSS sites and to map out the ethical issues they face.
To achieve this objective, I have reviewed the existing literature and unpublished documents, conducted individual interviews, observed surveillance activities and held informal discussions with HDSS research stakeholders.
Despite sharing a methodological approach, HDSS sites in sub-Saharan Africa have important differences based on the rationale for their establishment, location, type of additional data collected and characteristics of the populations they follow-up.
Many sites were initially set up to support clinical trials, one-time population surveys or surveillance of specific populations. For instance, the Navrongo HDSS traces its roots to a trial that investigated the impact of Vitamin A Supplementation on child survival while establishment of the Nairobi Urban HDSS was informed by a cross sectional survey of a representative sample of Nairobi slum.
HDSS sites were established, developed and continue to operate through international collaborations and partnerships. Locally, HDSS stakeholders include community members, ministries of health, research centres and universities. Funders, research centres and universities from Denmark, France, Japan, Sweden the United Kingdom and USA have significantly supported the establishment and running of HDSS sites in sub-Saharan Africa.
Within Africa, HDSS sites are located in the Eastern, Western and Southern regions of the continent. Many countries in Central Africa don’t have HDSS sites. A study using satellite imagery showed that current sites span all the major environmental zones in Africa. Individual HDSS sites only cover a relatively small population and region within a country. However, a study using statistical modelling, showed that the sites were representative of the wider environmental and socioeconomic conditions of the countries in which they were located.
For a HDSS to be a full member of the INDEPTH Network, it needs to regularly collect data on births, deaths, migration, pregnancy and verbal autopsy. It also needs to demonstrate availability of funding to support surveillance for at least one year. Sites that do not meet these criteria are classified as associate members. Inability to conduct verbal autopsies and lack of funds to support regular data collection are the main reasons for demotion of sites from full to associate members of INDEPTH.
Consent for collection of routine HDSS data is commonly obtained from a knowledgeable member of the household. The consent can be verbal or written. Overall, consenting processes vary between HDSS sites even for collection of the same type of data.
In the literature, the value of HDSS is seen through the lens of nested studies e.g vaccine development and long-term community benefits. However, my observations of surveillance and discussions with stakeholders revealed that HDSS may have direct individual benefits that are “hard to measure”. These include positive feelings associated with being visited or achieving closure from talking about the death of a loved one. The longitudinality of HDSS and the large populations involved can make it difficult to provide benefits sustainably.
The GHBN project has enabled me to describe HDSS sites and to map out ethical issues. These ethical issues are around consenting, community engagement, benefits and data sharing, governance and accountability. The verbal autopsy has emerged as an important area that I will explore in more depth during the remaining stages of my PhD study. I have learned a lot about the case study research method, gained experience in sharing my work and received valuable feedback from members of GHBN. In the next few months, I will be writing a research article on ethical issues for HDSS sites in sub-Saharan Africa.
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