WHO Guidelines on Ethical Issues in Public Health Surveillance P214263_WHO Guidelines on Ethical Issues.indd 1 20/06/17 2:42 PM WHO guidelines on ethical issues in public health surveillance ISBN 978-92-4-151265-7 © World Health Organization 2017 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial- ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, pro- vided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specifi c organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. 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P214263_WHO Guidelines on Ethical Issues.indd 2 20/06/17 2:42 PM Table of Contents Foreword ..................................................................................................................................5 Acknowledgements ..................................................................................................................7 I. Introduction ........................................................................................................................10 II. Background ........................................................................................................................14 Defi ning public health surveillance ..............................................................................14 Surveillance: ethics, law and history ............................................................................16 III. Framing the ethics of surveillance ......................................................................................19 Existing guidelines ......................................................................................................19 Public health ethics .....................................................................................................20 IV. Guidelines .........................................................................................................................24 Guideline 1. Countries have an obligation to develop appropriate, feasible, sustainable public health surveillance systems. Surveillance systems should have a clear purpose and a plan for data collection, analysis, use and dissemination based on relevant public health priorities. ...................................................................25 Guideline 2. Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance. ..................................................................27 Guideline 3. Surveillance data should be collected only for a legitimate public health purpose. ...........................................................................................................29 Guideline 4. Countries have an obligation to ensure that the data collected are of suffi cient quality, including being timely, reliable and valid, to achieve public health goals. ...............................................................................................................30 Guideline 5. Planning for public health surveillance should be guided by transparent governmental priority-setting. .................................................................31 Guideline 6. The global community has an obligation to support countries that lack adequate resources to undertake surveillance. ..............................................32 3 P214263_WHO Guidelines on Ethical Issues.indd 3 20/06/17 2:42 PM Guideline 7. The values and concerns of communities should be taken into account in planning, implementing and using data from surveillance. .........................33 Guideline 8. Those responsible for surveillance should identify, evaluate, minimize and disclose risks for harm before surveillance is conducted. Monitoring for harm should be continuous, and, when any is identifi ed, appropriate action should be taken to mitigate it. ....................................................................................................34 Guideline 9. Surveillance of individuals or groups who are particularly susceptible to disease, harm or injustice is critical and demands careful scrutiny to avoid the imposition of unnecessary additional burdens. ............................................................36 Guideline 10. Governments and others who hold surveillance data must ensure that identifi able data are appropriately secured. .........................................................37 Guideline 11. Under certain circumstances, the collection of names or identifi able data is justifi ed. ...........................................................................................................38 Guideline 12. Individuals have an obligation to contribute to surveillance when reliable, valid, complete data sets are required and relevant protection is in place. Under these circumstances, informed consent is not ethically required. .......................40 Guideline 13. Results of surveillance must be effectively communicated to relevant target audiences. ..........................................................................................41 Guideline 14. With appropriate safeguards and justifi cation, those responsible for public health surveillance have an obligation to share data with other national and international public health agencies. ...........................................................................43 Guideline 15. During a public health emergency, it is imperative that all parties involved in surveillance share data in a timely fashion. ................................................44 Guideline 16. With appropriate justifi cation and safeguards, public health agencies may use or share surveillance data for research purposes. .............................45 Guideline 17. Personally identifi able surveillance data should not be shared with agencies that are likely to use them to take action against individuals or for uses unrelated to public health. .........................................................................................46 V. The shifting boundaries of surveillance ...............................................................................48 References ..............................................................................................................................50 4 P214263_WHO Guidelines on Ethical Issues.indd 4 20/06/17 2:42 PM Foreword Public health surveillance is the bedrock the fi rst international framework of its kind, it of outbreak and epidemic response, but it fi lls an important gap. The goal of the guide- reaches far beyond infectious diseases. It is line development project was to to help policy- sometimes called the radar of public health: makers and practitioners navigate the ethical it allows health offi cials to map disease, spot