John Wilbanks: The Evolving Nature of Privacy, Confidentiality, and Anonymity

Today we're learning from John Wilbanks, chief commons officer at Sage Bionetworks, who has authored numerous publications about data sharing. On this panel, The Evolving Nature of Privacy and Confidentiality from the 2014 AER Conference, he discusses the evolving nature of privacy, confidentiality, and anonymity when it comes to collecting and analyzing "big data." Play the podcast in the player below or download it to your computer, smart phone, or tablet. Or, subscribe to the podcast on iTunes or Stitcher, listen on Google Play Music, or sign up to be notified when a new podcast is available.

John Wilbanks 2015A Crisis And An Opportunity

"Big data" is a term that applies to data sets so large and complex that they require new technology and techniques to make them useful for research. We live in a world where everything we do is tracked and that information is stored somewhere, from credit card purchases to social media interactions to mobile device apps to Uber accounts to video recordings on public streets.

When it comes to finding ethical ways to handle the enormous amount of personal data that is currently being collected and analyzed, Wilbanks simultaneously sees a crisis and an opportunity. Researchers are faced with the pressure to compromise the safeguarding of their subjects' personal data in order to achieve the greatest good for the greatest number of people. At the same time, this creates the unique opportunity in the bioethics space to make the argument human-centered on behalf of the subjects.

How to shift the obligation to the data user

Many people equate privacy with anonymity. But when it comes to collecting, analyzing, and storing personal data, anonymity is going to be impossible to guarantee until we create better technology.

This begs the question: How do we preserve the privacy and desires of individual? The answer is confidentiality. And we can improve confidentiality by switching the burden of consent from the subject to a burden of obligation on the part of the users and collectors of data.

This essentially comes down to creating new norms. In other words, we need to find new sociological ways to keep data users from using data irresponsibly.

One example of how to do this is to require that all data users take a video oath before downloading data in which they pledge not to re-identify anyone in this data set, not to harm anyone, and not contact anyone who doesn't want to be contacted. Because norms scale really well, this approach may be a better answer than legislation when it comes to protecting individual privacy in the age of big data.