Annex 4. Ethical considerations in public health surveillance

WHO has issued guidelines on ethical issues in public health surveillance, which have relevance to health inequality monitoring activities (1). The 17 guidelines seek to address key ethical considerations that arise when collecting, analysing and interpreting health-related data. Importantly, the guidelines acknowledge challenges that may arise in situations of persistent injustice or human rights violations. The guidelines are intended to assist people working in public health surveillance, including health workers and officials in government agencies, nongovernmental organizations and the private sector.

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. The organizations and people 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 other organizations and people who hold surveillance data must ensure 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 datasets 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 justification, organizations and people 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 the data to take action against individuals or for uses unrelated to public health.

Reference

1. WHO guidelines on ethical issues in public health surveillance. Geneva: World Health Organization; 2017 (https://iris.who.int/handle/10665/255721, accessed 23 September 2024).