"The communication of knowledge is a double-edged sword: on the one hand, knowledge may clearly empower; on the other, it may lead to injury, stigmatization or discrimination."
The World Health Organization (WHO) defines surveillance as "the continuous, systematic collection, analysis and interpretation of health-related data needed for the planning, implementation, and evaluation of public health practice". The goal of the guideline development project was to help policymakers and practitioners navigate the ethical issues presented by public health surveillance. The guidelines cover (i) the broad responsibility to undertake surveillance and subject it to ethical scrutiny; (ii) the obligation to ensure appropriate protection and rights; and (iii) considerations in making decisions about how to communicate and share surveillance data.
As WHO explains, the discipline of public health ethics has developed rapidly during the past two decades. Its central focus has been on articulating and exploring the ethical issues that arise in the pursuit of population health. This has resulted in a focus on concepts such as the common good, equity, solidarity, reciprocity, and population well-being. Although disease and injury always figure centrally in definitions of public health surveillance, some definitions include determinants of important public health events and environmental conditions that affect health. Understanding of public health surveillance differs considerably from country to country.
These guidelines represent a starting point for the sustained discussions that public health surveillance demands. It might help to address questions such as: What is the ethical obligation to undertake public health surveillance? What are the risks of conducting disease surveillance? How should such risks be balanced against population level benefits? When and how must relevant communities be engaged in the development of surveillance plans? How should the confidentiality of surveillance data be protected? What are the ethical obligations to share relevant public health surveillance data across public health authorities? With public health researchers? With communities and individuals who have contributed to surveillance systems? Are there circumstances when data sharing must be strictly prohibited? What institutional mechanisms should be established to ensure ethical issues are systematically addressed prior to data collection, use, and dissemination?
Those who participated in the creation of the guidelines observe that surveillance can help to create accountable institutions by providing information about health and its determinants and an evidentiary basis for establishing and evaluating public health policy. When the results of surveillance are shared with populations and policymakers in a timely and appropriate manner, they can serve as a tool for advocacy. Furthermore, surveillance can contribute to reducing inequities; the needs of populations in which suffering occurs, particularly when this suffering is unfair, unjust, and preventable, cannot be addressed if these populations are not first made visible. However, because surveillance can involve practices such as name-based reporting, it can trigger concerns about intrusions on privacy, discrimination, and stigmatisation, particularly in the absence of public trust that names will be secured and not inadvertently disclosed, or that aggregate data will only be released in a sensitive manner.
Thd document outlines and describes 17 ethical guidelines that can assist those involved in public health surveillance, including officials in government agencies, health workers, non-governmental organisations (NGOs) and the private sector. In brief, they are:
- 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.
- Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
- Surveillance data should be collected only for a legitimate public health purpose.
- 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.
- Planning for public health surveillance should be guided by transparent governmental priority-setting.
- The global community has an obligation to support countries that lack adequate resources to undertake surveillance.
- The values and concerns of communities should be taken into account in planning, implementing, and using data from surveillance.
- Those responsible for surveillance should identify, evaluate, minimise, 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.
- 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.
- Governments and others who hold surveillance data must ensure that identifiable data are appropriately secured.
- Under certain circumstances, the collection of names or identifiable data is justified.
- 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.
- Results of surveillance must be effectively communicated to relevant target audiences.
- With appropriate safeguards and justification, those responsible for public health surveillance have an obligation to share data with other national and international public health agencies.
- During a public health emergency, it is imperative that all parties involved in surveillance share data in a timely fashion.
- With appropriate justification and safeguards, public health agencies may use or share surveillance data for research purposes.
- 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.
The guidelines note that, since surveillance serves to support policy making and advocacy, governments have an obligation to publicise the results of surveillance activities and to act to ameliorate, to the extent feasible, the issues that are revealed by surveillance systems. In addition, it is necessary to create oversight mechanisms to assure that the ethical foundations of surveillance activities are reflected in policy and practice.
TechNet-21 and "Ethics of public health surveillance: new guidelines", by Amy L Fairchild, Ali Akbar Haghdoost, Ronald Bayer, Michael J Selgelid, Angus Dawson, Abha Saxena, and Andreas Reis, The Lancet, June 27 2017 - both accessed on November 14 2017. Image caption/credit: WHO Immunization officers visit Quang Binh Province, Viet Nam to monitor the Measles-Rubella Immunization campaign. WHO / WPRO / Emmanuel Eraly