Health data management before, during and after emergencies and disasters - Data ethics
Real-time health data help to plan and implement appropriate and timely interventions in and after emergencies. However, ethical challenges arise throughout health emergency and disaster risk management (Health EDRM) [1]. Decisions and priorities in both public health interventions and research involve ethical challenges such as privacy, integrity, appropriateness of use, and ownership of data espscially when dealing with health data [2].
Emergencies create unique challenges in logistics, security, resources and time-management [3]. Standard processes and procedures designed to operate in non-emergency circumstances may not be adaptable to the uncertainty inherent to disasters. Therefore, to ensure the protection of individuals’ fundamental human rights and freedoms, including their right to protect personal data, the WHO Health EDRM Knowledge Hub on Data Manamgement introduces available policies and principals related to Ethics in data management and research that needs to be considered when collecting, using, or sharing peoples’ health data.
WHO principles, policies and learning materials
WHO Data principles (https://www.who.int/data/principles)
The data principles of WHO provide the five principles of data governance for WHO in order to define how data that flows into, across and out of WHO is collected, processed, shared and used.
WHO Policy on the use and sharing of data collected by WHO in Member States outside the context of public health emergencies (https://www.who.int/about/policies/publishing/data-policy)
Data are the basis for all sound public health actions and the benefits of data-sharing are widely recognized, including scientific and public health benefits. Whenever possible, WHO wishes to promote the sharing of health data, including but not restricted to surveillance and epidemiological data. The purpose of the policy is to clarify current policy and practice on use and sharing of data collected in Member States by WHO. This page summarizes the principles and requirements of the policy.
WHO Ethics in epidemics, emergencies and disasters: research, surveillance and patient care (2015) (https://www.who.int/publications/i/item/9789241549349)
This training manual provides material on ethical issues in research, surveillance and patient care in emergency situations, as well as related issues to reduce risks before, during and after events. This training manual has two parts. Part 1 covers ethical issues in research and surveillance, such as conflicts that might arise between the common good and individual autonomy, ethics oversight and publication ethics. Part 2 covers patient care, including triage, standards of care and the professional duties of health care workers in emergencies.
More information
More information on ethical considerations for health data collection in emergencies can be found in Chapter 3.4 Ethics in Research in the WHO Guidance on Research Methods for Health Emergency and Disaster Risk Management, revised 2022.
References
[1] WHO, Public Health England, and the United Nations Office for Disaster Risk Reduction. Health Emergency and Disaster Risk Management Ethics. 2017. https://www.who.int/publications/i/item/health-emergency-and-disaster-r… (accessed 01 June 2023).
[2] Viberg Johansson J, Bentzen HB, Mascalzoni D. What ethical approaches are used by scientists when sharing health data? An interview study. BMC Med Ethics. 2022 Apr 11;23(1):41. doi: 10.1186/s12910-022-00779-8. PMID: 35410285; PMCID: PMC9004072.
[3] Saxena A, Horby P, Amuasi J, Aagaard N, Köhler J, Gooshki ES, et al. Ethics preparedness: facilitating ethics review during outbreaks - recommendations from an expert panel. BMC Medical Ethics 2019: 20: 29.
[4] Dubois C, Wright K, Parker M Chapter 3.4 Ethics in Research. In: WHO Guidance on Research Methods for Health Emergency and DIsaster Risk Management, revised 2022. World Health Organization; 2022: 185-199. https://apps.who.int/iris/handle/10665/363502 (accessed 01 June 2023).
