Photo CC-BY Kevin Krejci.
The idea of informed consent is not new to international development. However, new forms of data collection (via SMS, sensors, digital metadata) that do not involve human survey collectors have changed what informed consent means. Even when human enumerators are still present, informed consent is more complicated and not always received due to a lack of understanding what data is collected with digital tools.
One of the key concepts of informed consent is the availability of a simple opt-out where the project participant can choose not to provide sensitive data and still receive services. In implementation, this can be problematic because an opt-out is not always provided and if it is, might be perceived by project participants as a prerequisite to receiving services. Because most humanitarian organizations work or coordinate with governments, the inability to opt-out from giving up data could either put them at risk of the government, or being unable to receive needed services, such as food and water.
Use of biometric in refugee camps has been criticized for these very reasons, yet, due to the perceived success, biometrics are starting to be required primarily for other humanitarian assistance projects, particularly in the area of fraud prevention. As these and other emerging forms of technology converge and intersect with donor interests, issues of informed consent come to the forefront.
B.) Mini Case-Study
When the most recent ebola crisis in West Africa broke out in 2014, international organizations deviated from their typical way of coordinating the response (i.e., sharing data among responding organizations) to using telecommunication data (i.e., ‘big data’) as a new method for responding to humanitarian crises. In the case of the ebola response, call detail records (CDRs) were used to do contact tracing–a method of mapping (identifying and diagnosing) everyone who came into contact with a specific disease. A recent study of the use of data in the ebola response by Sean McDonald looked at the ethics of using detailed telecommunications data, which is typically illegal for use by non-governmental organizations. While McDonald only tacitly states that the humanitarian organizations acted illegally, he does note that CDR is typically not used due to a number of data protection and privacy laws. General illegality of using CDRs stems from its difficulty to de-identify/anonymize — in the case of the ebola response, CDRs for contact tracing needed to be able identify a single user and their locations, making any sort of de-identification dubious at best.
Contact tracing has been used successfully with ebola response in the past; however, McDonald notes that the technical capacity of responders using CDRs was not sophisticated and therefore of dubious value. The data were manually entered and therefore could not provide real-time data. His conclusion is that CDRs provided questionable, or no, real benefit to other sources of data, such as burial locations, which would have been more helpful and have been used in the past.9 If we follow McDonald’s conclusion that CDRs were ineffective, the only substantial value of their use is to create the infrastructure for large-scale surveillance of the citizens in those countries.
The desire of humanitarian organizations to reap the benefit of data, in the case of ebola, led to questionable practice that valued methodological experimentation over the human beings they were providing ‘aid’ to. The author has spoken to a number of accountability activists in the West African countries affected by ebola, where their work against government corruption puts their life in danger. ICT4D’s failed data experiment and the surveillance network it created further endangers these activists by providing the full infrastructure for surveillance to their governments.
Even if the use of CDR data was a resounding success, no one has asked the citizens if they would have been willing to give their consent given the issues around government corruption. By taking a patronizing perspective, ICT4D removes agency of the citizens for change and potentially damages their ability to organize against corruption in the future. By acting without consent, donors and implementers demonstrate their true interests do not lie in protecting project participants, but their own interests — even if their interests are merely to experiment with methodology.