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Ethical issues to be considered in second generation surveillance

Over the years, those working on surveillance in diverse countries have increasingly expressed the need to systematically address the many ethical questions that arose in the field. Past and current debates regarding the extent to which the ethical review principles that guide research on human subjects should also apply surveillance activities for HIV infection have highlighted the need to clarify the principles involved and to suggest ways to implement them.. The document Ethical Issues in Second Generation Surveillance is designed to provide some background to the ethical issues for further discussions and to propose some points that need to be considered when conducting surveillance. The document draws on its authors' wide experience in examining the ethical dimension of research and public health. While acknowledging the potential tension between the protection of the community and the rights of individuals, the document provides suggestions about how they may be balanced when surveillance activities are implemented.

An effort is made throughout the publication to keep in mind the specific situation of mostly low- and middle-income countries. Because the ethical questions vary depending on the context of the epidemic, attention is given to the different types of epidemics – generalized, concentrated and low-level – which also have implications for strategies for collecting and disseminating data. In addition, although discussions of the trade-offs between disclosure and privacy have been shaped by earlier situations in which treatment was not available, the increased availability of medicines to treat HIV has changed ideas about the responsibilities of those involved in surveillance, and the issue of care is now difficult or even impossible to avoid entirely even in surveillance activities.

The document was commissioned by the WHO/UNAIDS Surveillance Working Group and is authored by Ron Bayer and Amy Fairchild at Columbia University. It is not an official document of WHO nor UNAIDS, nor does it necessarily reflect WHO or UNAIDS policy. It is however designed to help those who are responsible for surveillance activities and more generally, health professionals concerned with ethics, to gain some familiarity with the issues and to formulate ways to address them in the course of implementation.

- Download PDF file in English (48 pages, 193 kb)

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