Managing Private Data in Emergencies
In many cases, working within the emergency management field places us with our hands on data connected to essentially vulnerable populations (disaster victims, etc.); we must address the balance between data collection and privacy.
The reality is, personal privacy is almost never in the minds of individuals dealing with disasters and crises in their lives. They generally have more pressing issues to worry about. The flipside of this is that in a normally functioning world, concerns around privacy are often at the top of everyone's list. “Laws such as HIPAA, and others require organizations collecting personal information to handle and protect it in certain ways, but in many circumstances, privacy laws and regulations may not directly apply to humanitarian work.”
The Harvard Humanitarian Initiative’s Signal Code takes a rights based approach towards humanitarian security and privacy where all people have the right to agency over the collection, use and disclosure of their personally identifying information. This code states that there are some basic principles that should be followed by all humanitarian workers:
Privacy by Design – All data collection systems should be designed with privacy in mind
Informed Consent – To the extent possible, disaster survivors should be given the opportunity to freely express informed consent about any data collection.
Data collection minimization – Humanitarian organizations should minimize the data they collect to only that which is necessary.
Data Quality – Personal data collected should be relevant to the purpose for which it was collected, kept up-to-date and accurate.
Use Limitation – Personal data collected for one purpose should not be repurposed for other uses.
Security – The personal data collected should be reasonably protected from unauthorized disclosure.
As Emergency Managers we often have our hands on information that is private and needs protected. We must always be aware of the special responsibilities we have around privacy and data protection. Vulnerable populations in crisis may not have the ability to make informed decisions, so we need to assist them with this during these trying times.