People today shed data wherever they go. Data flow from their financial transactions, social-media platforms, wearable health monitors, smartphone apps and phone calls.

By tapping massive digital data sets collected by phone providers, technology companies and government agencies, researchers hope to reveal patterns in the data and ultimately to improve lives. Such studies range from an analysis of call records in Nepal that showed where people moved to following an earthquake, so that aid could be delivered; to estimates of pollution exposure based on location data from the Google Maps smartphone app. But relatively little attention has been given to the ethics of how this research is conducted and, in particular, how those who supply their data should consent to taking part.

In general, proposals for research involving people are vetted by guidelines rooted in the 1947 Nuremberg code and the subsequent 1964 Declaration of Helsinki. These are ethical principles forged after unconscionable Nazi experimentation during the Second World War. They demand that researchers obtain voluntary consent from people who understand the subject matter of the study well enough to make an informed decision about whether to take part. But informed consent is often not required for studies that access anonymized and pooled data.

…continue reading ‘Editorial: Time to Discuss Consent in Digital-Data Studies’

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