They are the first international framework to provide ethics guidance on issues such as the collection, management and use of data for public health surveillance, and also to advance the ethical obligation to develop public health surveillance systems.
We share the 17 guidelines below. The document is available at: http://apps.who.int/iris
Please don’t hesitate share it with your counterparts and colleagues at PAHO working on the different topics of public health surveillance, or to contact us to discuss the guidelines or present them to your counterparts or colleagues.
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.
Guideline 2. Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
Guideline 3. Surveillance data should be collected only for a legitimate public health purpose.
Guideline 4. Countries have an obligation to ensure that the data collected are of sufficient quality, including being timely, reliable and valid, to achieve public health goals.
Guideline 5. Planning for public health surveillance should be guided by transparent governmental priority-setting.
Guideline 6. The global community has an obligation to support countries that lack adequate resources to undertake surveillance.
Guideline 7. The values and concerns of communities should be taken into account in planning, implementing and using data from surveillance.
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 identified, appropriate action should be taken to mitigate it.
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.
Guideline 10. Governments and others who hold surveillance data must ensure that identifiable data are appropriately secured.
Guideline 11. Under certain circumstances, the collection of names or identifiable data is justified.
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.
Guideline 13. Results of surveillance must be effectively communicated to relevant target audiences.
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.
Guideline 15. During a public health emergency, it is imperative that all parties involved in surveillance share data in a timely fashion.
Guideline 16. With appropriate justification and safeguards, public health agencies may use or share surveillance data for research purposes.
Guideline 17. Personally identifiable 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.