Towards an appropriate ethics framework for Health and Demographic Surveillance Systems (HDSS): learning from issues faced in diverse HDSS in sub-Saharan Africa

Introduction Health and Demographic Surveillance Systems (HDSS) collect data on births, deaths and migration from relatively small, geographically defined populations primarily in Africa and Asia. HDSS occupy a grey area between research, healthcare and public health practice and it is unclear how ethics guidance that rely on a research-practice distinction apply to HDSS. This topic has received little attention in the literature. In this paper, based on empirical research across sub-Saharan Africa, we map out key ethical issues for HDSS and assess the relevance of current ethics guidance in relation to these findings. Methods We conducted a qualitative study across seven HDSS sites in sub-Saharan Africa, including individual in-depth interviews and informal discussions with 68 research staff, document reviews and non-participant observations of surveillance activities. Qualitative data analysis drew on a framework approach led by a priori and emergent themes, drawing on the wider ethics and social science literature. Results There were diverse views on core ethical issues in HDSS, including regarding the strengths and challenges of community engagement, informed consent and data sharing processes. A key emerging issue was unfairness in the overall balance of benefits and burdens for residents and front-line staff when compared with other stakeholders, particularly given the socioeconomic contexts in which HDSS are generally conducted. Conclusion We argue that HDSS operate as non-traditional epidemiologic research projects but are often governed using ethics guidance developed for traditional forms of health research. There is a need for specific ethics guidance for HDSS which prioritises considerations around fairness, cost-effectiveness, ancillary care responsibilities, longitudinality and obligations of the global community to HDSS residents.

To create a longitudinal community-based study linked to hospital morbidity surveillance in order to define the incidence and prevalence of local diseases of childhood, evaluate the impact of communitybased interventions against infectious diseases and to provide an epidemiological sampling frame for studies KEMRI Wellcome Trust [1].

Nairobi
To provide a platform to investigate the long-term social, economic and health consequences of urban residence, and to serve as a primary research tool for intervention and impact evaluation studies focusing on the needs of the urban poor in sub-Saharan Africa [2,3].

Kisumu
To support a large insecticide-treated bed net trial. HDSS sustained post-trial to provide multi-disciplinary research data [4].

Kombewa
To support regulated clinical trials, nested studies and local disease surveillance, by integrating household and health-facility-based data [5].

Mbita
To establish baseline data on health, demographic, socio-economic and environmental characteristics of communities in Mbita District. To evaluate impact of health and socioeconomic interventions, support research on communicable and non-communicable diseases, and provide platform for education and training [6].

Ghana Dodowa
Established to enable registration of households into a pilot community health insurance scheme (2003). Could not be sustained after initial census due to lack of funding. With research funding in 2005, re-established to provide platform for large scale trials and surveillance [7].

Kintampo
To research diseases of public health importance nationally and internationally and contribute to reducing these diseases by developing interventions and sharing data with ministry of health and other health organisations.

Navrongo
Established to support evaluation of a permethrin impregnated bed net trial. Preceded by surveillance activities that focussed on children <5years as part of the Ghana Vitamin A Supplementation Trial [8].

Iganga/Mayuge
Established as a research setting to provide data for informing local and global policy.
To serve as platform for developing operational research capacity for graduate students and academic staff at Makerere University, and to generate continuous population data for evidence-based policymaking at district and national level[9].

Kyamulibwa
To examine trends in prevalence and incidence of HIV infection and their determinants [10].

Rakai
To support population studies on HIV/AIDS [11].

Malawi Karonga
To provide a platform for epidemiological studies of HIV and HIVassociated infectious disease and to monitor the impact of interventions [12].

Burkina Faso Kaya
To regularly generate quality data for assessing population health, evaluating health interventions and supporting research [13].

Nanoro
To provide a highly standardized means of monitoring the population living within the catchment area of a district hospital in Nanoro and to support a large pharmacovigilance study on artemisinin-based combination treatments (ACT) and a phase 3 vaccine trial [14].

Nouna
To provide reliable demographic and health indicators for a rural population in Burkina Faso, and to generate an infrastructure and a sampling frame for epidemiological and clinical studies nested into this dynamic cohort [15].

Oagadougou
To address the problems of the urban poor, by collecting data on the lives of people in one informal and one formal neighbourhood in Oagadougou [16].

Cote d'Ivoire Taabo
To serve as a platform for evaluating interventions and health system strengthening with the aim of reducing morbidity and mortality especially from malaria and NTDs in Taabo, Cote d'Ivoire and sub-Saharan Africa. To conduct interdisciplinary research and build capacity in health research [17].

Butajira
To develop and evaluate a system for continuous registration of births and deaths, to generate valid data on fertility and mortality and to provide a population and study base for essential health research and intervention in the area.

Dabat
To generate longitudinal data on health and population at district level and provide a study base and sampling frame for communitybased research.

Kersa
To create a framework for research at the community level, given the lack of reliable information about health problems of public health importance [19].

Kilite Awlaelo
To generate longitudinal health and demographic data for a rural lowincome population [20].

Gambia Farafenni
To generate health and demographic data for the evaluation of a primary health care programme by The Gambian government [21].

West Kiang
To support research and provision of healthcare services [22].

Guinea Bissau Bandim
To assess the prevalence of neonatal tetanus and to collect data on child mortality to monitor the impact of a Danish International Development Agency (DANIDA)-sponsored project to strengthen primary healthcare[23].

Manhica
To provide data on fertility, migration and mortality and support epidemiological studies of infectious diseases for children < 5yrs and pregnant women [24].

Nigeria
Nahuche To support research for informing policy health service delivery [25].

Cross River
To generate timely and reliable data to inform policy makers on differences in population characteristics and access to health services [26].

Senegal Bandafassi
To study the health and demographic situation of a rural West African population and assess changes over time, including causes of these changes. Preceded by a genetic study that involved collection of blood samples and demographic information to investigate survival rates in various genotype sub-groups in the population [27].

Mlomp
To provide health and demographic data for a rural population that differed from that in Niakhar and Bandafassi in terms of historic, economic and ethnic characteristics, and therefore enhance the  [28].

Niakhar
To demonstrate the capacity to record reliable demographic and epidemiological data in rural areas of Africa. Because previous population-based data collection and civil registration had excluded African populations in rural areas [29].

South Africa Agincourt
To provide reliable population-based information for programme planning and resource allocation towards strengthening the district health system [30].

AHRI
To provide high quality longitudinal data for monitoring population health and demographic changes as a result of the HIV epidemic and to evaluate interventions against HIV [31].

DIMAMO (formerly Dikgale)
To serve as a sampling framework for monitoring non-communicable diseases and their risk factors, given concerns in the 1990's that exposures to risk factors for NCDs in South Africa were increasing with changing lifestyles [32].

Tanzania Ifakara
To support a field trial on effectiveness of social marketing of bed nets on morbidity and mortality of children aged under 5 years [33].

Rufiji
To evaluate the impact, on morbidity and mortality, of a policy that introduced evidence-based health planning. Evaluate impact of changes in health polices and services [34].

Magu
To monitor mortality, fertility and mobility in the general population as part of an open cohort HIV study [35].