Main Article Content
Although there should be no ambivalence regarding the importance of the Health and demographic surveillance System (HDSS), surveillance and research on human populations is beset with a variety of ethical issues. This is particularly true in the area of global health research, which merits attention in health policies related to research ethics. The objective of this paper is to analyse the use of HDSS sites to obtain data and to resolve ethical conflicts over HDSS approaches, such as those related to data collection, surveillance, and research. This analysis is done in light of guidance on central ethical issues relating to health research such as the International Ethical Guidelines for Health Research. This paper is a critical review of literature of ethics in health and demographic research and surveillance, which has identified and analyzed the major areas of contemporary ethical concerns with respect to surveillance and research conducted by HDSS in accordance with existing ethical guidelines for health research. Concerns addressed in this paper are an overt admonishment about the importance of a range of issues from informed consent, beneficence, and justice, to advice on the best means to utilize surveillance data. Although use of HDSS allows for invaluable contributions by providing longitudinal data for in-depth understanding of surveillance areas, which indirectly guides policies, programs, and interventions at national and international levels, studies using this means of gathering data are beset with multidimensional ethical concerns with respect to the research and surveillance they carry out. Many of the ethical concerns cannot be resolved under the broader ethical standards set by the major sources of international ethical guidelines or frameworks. Thus, the paper stresses that different and innovative lines of thinking and approaches are required for studies employing HDSS to ensure the best ethical conduct in health research for the improvement of global health.
• Adazu, K., Lindblade, K.A., Rosen, D.H., Odhiambo, F., Ofware, P., Kwach, J., Karanja, D. (2005). Health and demographic surveillance in rural western Kenya: A platform for evaluating interventions to reduce morbidity and mortality from infectious diseases. The American Journal of Tropical Medicine and Hygiene, 73(6), 1151-1158.
• Alcabes, P., & Williams, A.B. (2001). Human rights and the ethic of care: A framework for health research and practice. Yale J. Health Pol'y L. & Ethics, 2, 229.
• Asendorpf, J.B., Van De Schoot, R., Denissen, J.J., & Hutteman, R. (2014). Reducing bias due to systematic attrition in longitudinal studies: The benefits of multiple imputation. International Journal of Behavioral Development, 38(5), 453-460.
• Baiden, F., Hodgson, A., & Binka, F.N. (2006). Demographic surveillance sites and emerging challenges in international health. Bulletin of the World Health Organization, 84, 163-163.
• Benatar, S.R. (2002). Reflections and recommendations on research ethics in developing countries. Social Science & Medicine, 54(7), 1131-1141.
• Bhutta, Z.A. (2004). Beyond informed consent. Bulletin of the World Health Organization, 82, 771-777.
• Byass, P., Worku, A., Emmelin, A., & Berhane, Y. (2007). DSS and DHS: Longitudinal and cross-sectional viewpoints on child and adolescent mortality in Ethiopia. Population Health Metrics, 5(1), 12.
• Carney, P.A., Geller, B.M., Moffett, H., Ganger, M., Sewell, M., Barlow, W.E., & Ballard-Barbash, R. (2000). Current medicolegal and confidentiality issues in large, multicenter research programs. Americian Journal of Epidemiology, 152, 371–378.
• Carrel, M., & Rennie, S. (2008). Demographic and health surveillance: Longitudinal ethical consider-ations. Bulletin of the World Health Organization, 86, 612-616.
• Cassell, J., & Young, A. (2002). Why we should not seek individual informed consent for participation in health services research. Journal of Medical Ethics, 28(5), 313-317.
• Chevrier, R., Foufi, V., Gaudet-Blavignac, C., Robert, A., & Lovis, C. (2019). Use and understanding of anonymization and de-identification in the biomedical literature: Scoping review. Journal of Medical Internet Research, 21(5), e13484. doi: https://doi.org/10.2196/13484.
• Clark, S. (2015). Health and demographic surveillance systems and the 2030 agenda. In United Nations expert group meeting on stregthening the demographic evidence base for the post 2015 development agenda (5-6 October 2015 ed.). Population Division, Department of Economic and Social Commission Affairs, United Nations Secretariat, New York.
• Coughlin, S.S. (2006). Ethical issues in epidemiologic research and public health practice. Emerging Themes in Epidemiology, 3(1), 16.
• Council on International Organizations of Medical Sciences (CIOMS). (2016). International ethical guidelines on biomedical research involving human subjects. Retrieved from https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf
• Delaunay, V., Douillot, L., Diallo, A., Dione, D., Trape, J.F., Medianikov, O., Sokhna, C. (2013). Profile: The Niakhar health and demographic surveillance system. International Journal of Epidemiology, 42(4), 1002-1011.
• Diallo, D.A., Doumbo, O.K., Plowe, C.V., Wellems, T.E., Emanuel, E.J., & Hurst, S.A. (2005). Community permission for medical research in developing countries. Clinical Infectious Diseases, 41(2), 255-259.
• German, R.R., Horan, J.M., Lee, L.M., Milstein, B., & Pertowski, C.A. (2001). Updated guidelines for evaluating public health surveillance systems; recommendations from the Guidelines Working Group, v. 50, no. RR-13, CDC. Retrieved from https://stacks.cdc.gov/view/cdc/13376
• Hallinan, Z.P., Forrest, A., Uhlenbrauck, G., Young, S., & McKinney Jr, R. (2016). Barriers to change in the informed consent process: A systematic literature. IRB, 38(3).
• Herbst, K., Juvekar, S., Bhattacharjee, T., Bangha, M., Patharia, N., Tei, T., Sankoh, O. (2015). The INDEPTH data repository: An international resource for longitudinal population and health data from Health and Demographic Surveillance Systems. Journal of Empirical Research on Human Research Ethics, 10(3), 324-333.
• Mittelstadt, B.D., & Floridi, L. (2016). The ethics of big data: Current and foreseeable issues in biomedi-cal contexts. Sci Eng Ethics, 22, 303–341. doi: https://doi.org/10.1007/s11948-015-9652-2
• Mondain, N., Delaunay, V., & Ouédraogo, V. (2016). Reporting results back in Health and demographic surveillance systems (HDSS): An ethical requirement and a strategy for improving health behaviours. African Population Studies, 30(2).
• Oduro, A.R., Wak, G., Azongo, D., Debpuur, C., Wontuo, P., Kondayire, F., Williams, J. (2012). Profile of the Navrongo health and demographic surveillance system. International Journal of Epidemiology, 41(4), 968-976.
• Page, K. (2012). The four principles: Can they be measured and do they predict ethical decision making? BMC Medical Ethics, 13:10. doi:10.1186/1472-6939-13-10.
• Sankoh, O., & Byass, P. (2012). The INDEPTH network: Filling vital gaps in global epidemiology. Oxford University Press.
• Stoto, MA. (2008). Public health surveillance in the twenty-first century: achieving population health goals while protecting individuals’ privacy and confidentiality. Georgetown Law Journal, 96, 703–719.
• The International Network of Demographic Evaluation of Populations and Their Health (INDEPTH). (2019). About us-INDEPTH Network, Retrieved 16 December 2019. Retrieved from http://www.indepth-network.org/about-us
• Tollman, S.M., & Zwi, A.B. (2000). Health system reform and the role of field sites based upon demographic and health surveillance. Bulletin of the World Health Organization, 78, 125-134.
• Wanyua, S., Ndemwa, M., Goto, K., Tanaka, J., K’Opiyo, J., Okumu, S., . . . Ichinose, Y. (2013). Profile: The Mbita health and demographic surveillance system. International Journal of Epidemiology, 42(6), 1678-1685.
• White, M.J. (2017). Migration and demographic surveillance: an overview of opportunities and challenges. In M. Collinson, K. Adazu, M. White and S. Findley (Eds.), The Dynamics of Migration, Health and Livelihoods (pp. 3-18). Routledge.
• Williams, G. & Iris, P. (2016). Consent and confidentiality in the light of recent demands for data sharing, Biometrical Journal. Retrieved from https://onlinelibrary.wiley.com/doi/full/10.1002/
bimj.201500044 doi: https://doi.org/10.1002/bimj.201500044
• Wolke, D., Waylen, A., Samara, M., Steer, C., Goodman, R., Ford, T., & Lamberts, K. (2009). Selective drop-out in longitudinal studies and non-biased prediction of behaviour disorders. The British Journal of Psychiatry, 195(3), 249-256.
• World Health Organization. (2015). Global health ethics: Key issues. Geneva, Switzerland: WHO. Retrieved from https://www.who.int/ethics/publications/global-health-ethics/en/
• World Medical Association (WMA). (2013). Declaration of Helsinki. Ethical principles for medical research involving human subjects. Retrieved from https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects.
• Ye, Y., Wamukoya, M., Ezeh, A., Emina, J. B., & Sankoh, O. (2012). Health and demographic surveillance systems: A step towards full civil registration and vital statistics system in sub-Sahara Africa? BMC public health, 12(1), 741.