Surveillance

Surveillance is an integral part of humanitarian and disaster research. For instance, it can be used as a research tool during a health emergency to collect risk information related to gender, pregnancy, age, race, and other demographics. This is especially useful during an infectious disease outbreak where data are needed quickly and a clinical trial may not feasible. As a public health activity, the goal of surveillance is to improve population health rather than contribute to generalizable knowledge, thus separating it from research and requirements to obtain ethics approval or the informed consent of persons from whom data are collected. However, when the scope of surveillance is very broad, it can be considered human subjects research and therefore should follow research ethics guidelines. Regardless of whether surveillance fits the definition of research, it raises ethical considerations which should be addressed, especially during a health emergency. These include, but are not limited to, considerations of the common good, respect for persons, and equity promotion. Some specific ethical considerations include:

-The use of digital technologies, where issues of data privacy and confidentiality are highly relevant. Confidentiality is one of the most important aspects of surveillance since data may be collected without individuals knowing or consenting. In humanitarian settings, protecting confidentiality can be more difficult than in a stable environment.

-Access to surveillance data and timely publication of findings. It is important that data are relevant to a public health emergency or research question and will promote the common good. Researchers should avoid sharing data just for the sake of sharing as this will help to further protect privacy and confidentiality of populations.

-Heightened accountability in surveillance oversight and during data collection.

-Proactively evaluating the different priorities and types of resources which should be allocated within a surveillance population.

Resources:

WHO guidelines on ethical issues in public health surveillance. Geneva: World Health Organization; 2017. Licence: CC BY-NC-SA 3.0 IGO This document provides 17 ethical guidelines for conducting public health surveillance and offers practical ways to deal with the ethical challenges, whether unforeseen or expected, in these scenarios.

World Health Organization (2015) Ethics in epidemics, emergencies and disasters: research, surveillance and patient care: training manual. ISBN 978 92 4 154934 9. A useful training manual for researchers at the intersections of research, surveillance, and clinical care during a disaster or public health emergency.

Caals, K., Saxena, A. & Ho, C.WL. (2017) Ethics of Epidemics, Research and Surveillance: a WHO Workshop Report. ABR 9, 265–271. A summary of a WHO ethics workshop that reviewed the overlapping activities of research, surveillance, and clinical care during infectious disease outbreaks.