Academic journal article Bulletin of the World Health Organization

Demographic and Health Surveillance: Longitudinal Ethical Considerations / Surveillance Demographique et Sanitaire : Considerations Ethiques Longitudinales / Consideraciones Eticas En Los Sistemas Iongitudinales De Vigilancia Demografica Y Sanitaria

Academic journal article Bulletin of the World Health Organization

Demographic and Health Surveillance: Longitudinal Ethical Considerations / Surveillance Demographique et Sanitaire : Considerations Ethiques Longitudinales / Consideraciones Eticas En Los Sistemas Iongitudinales De Vigilancia Demografica Y Sanitaria

Article excerpt

Introduction

Gross health inequalities between the developed and developing world drive the activities of researchers and public-health practitioners worldwide. The need for empirical evidence to guide further research and to direct health interventions is acute, as reliable data is in short supply and is often based on indirect estimates or geographically limited to urban areas. (1) In developing countries, and in particular those that lack effective vital registration systems, small-scale combined Demographic and Heahh Surveillance (DHS) systems can provide invaluable field data on longitudinal fertility and mortality patterns. (1-4) DHS systems are distinct from demographic and health surveys. The former represent long-term monitoring of specifically defined populations, typically residing in a small geographic region, while the latter are one-time representative samplings of a country or region. (5) Though the data collected in surveillance and surveys is similar in scope, the timeframe and populations studied are quite different.

Located primarily in Africa and Asia, DHS are effective and comprehensive data collection systems because they focus on the populations of small, clearly delineated geographic areas. Central to all DHS is continuous demographic surveillance, consisting of initial and repeat censuses of the chosen population, registering each individual resident and recording their associated information, such as socioeconomic and behavioural data. (6,7) Health outcomes and vital events in the area are then linked to individual demographic records for precise, rather than estimated, data on fertility, morbidity, mortality and migration. (8) Research findings and interventions that have emerged from DHS in the decades since World War Two include the development of oral rehydration solution; vaccine efficacy trials for measles, cholera and tetanus; an understanding of the relationship between cessation of breastfeeding and malnutrition; and data on the effects of environmental alteration on human health. (7,9) Because DHS study sites are typically chosen for their high rates of infectious disease or their fertility patterns, (8) the interventions and findings that are associated with DHS have direct impact on the health and wellbeing of the populations under study.

Such findings are the primary justification for the intense monitoring associated with DHS. The utility to public health of surveillance data and health interventions that benefit both the local community and global populations is weighed against potential risks to individuals. (4) Such considerations of individual risk versus community benefit, commonly found in medical and research ethics, are in the DHS context rendered more complex by the ambiguous position of surveillance, which transcends traditional distinctions between research, care and monitoring. While the potential for DHS data to increase global health equity and local public health is genuine, the ethical pitfalls associated with decades-long, intense DHS should not be overlooked or go unaddressed.

Current regulatory framework

Balancing general welfare and individual rights is the backbone of ethical regulations regarding the use of human subjects in research. The principles of respect for persons, beneficence and justice outlined in the 1979 Belmont Report are broad categories designed to guide researchers in their selection and treatment of human subjects. (10) The Belmont Report differentiates between medical practice and research but no provision is made for surveillance. Surveillance spans practice and research, neither providing treatment for the benefit of individuals nor hypothesis testing. Activities accompanying DHS, such as provision of medical care or vaccine trials, clearly fall into the two categories of practice and research, but what about surveillance?

Helping researchers navigate the ethical issues arising in longitudinal DHS systems is the guidance issued by the Council for International Organizations of Medical Sciences (CIOMS) and the recommendations developed by the International Network of field sites with continuous Demographic Evaluation of Populations and Their Health (INDEPTH), along with the activities of individual ethics committees and institutional review boards. …

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