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Towards an appropriate ethics framework for Health and Demographic Surveillance Systems (HDSS): learning from issues faced in diverse HDSS in sub-Saharan Africa
- Source :
- BMJ Global Health, Vol 6, Iss 1 (2021), BMJ Global Health
- Publication Year :
- 2022
- Publisher :
- BMJ Publishing Group, 2022.
-
Abstract
- IntroductionHealth 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.MethodsWe 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.ResultsThere 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.ConclusionWe 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.
- Subjects :
- medicine.medical_specialty
Medicine (General)
education
qualitative study
Infectious and parasitic diseases
RC109-216
0603 philosophy, ethics and religion
03 medical and health sciences
0302 clinical medicine
Empirical research
R5-920
Informed consent
Health care
medicine
Humans
030212 general & internal medicine
Sociology
Socioeconomic status
Africa South of the Sahara
Qualitative Research
Demography
Original Research
Informed Consent
Community engagement
Information Dissemination
business.industry
Health Policy
Public health
public health
Public Health, Environmental and Occupational Health
06 humanities and the arts
Public relations
Data sharing
epidemiology
060301 applied ethics
business
health systems
Qualitative research
Subjects
Details
- Language :
- English
- Database :
- OpenAIRE
- Journal :
- BMJ Global Health, Vol 6, Iss 1 (2021), BMJ Global Health
- Accession number :
- edsair.doi.dedup.....20b466ed7b48ca82b43e95a9c4ce5980