This is our most comprehensive moral and practical argument to date for the creation of a public datatrust that provides public access to today’s growing store of sensitive personal information.
At this point, there can be no doubt that sensitive personal data, in aggregate, is and will continue to be an invaluable resource for commerce and society. However, today, the private sector holds a near monopoly on such data. We believe that it is time We, The People gain access to our own data; access that will enable researchers, policymakers and NGOs acting in the public interest to make decisions in the same data-informed ways businesses have for decades.
Access to sensitive personal information will be the next “Digital Divide” and our work is perhaps best described as an effort to bridge that gap.
Still, we recognize that there are many hurdles to overcome. Currently, highly valuable data, from online behavioral data to personal financial and medical records are silo-ed and, in the name of privacy, inaccessible. Valuable data is kept out of the reach of the public and in many cases unavailable even to the businesses, organizations and government agencies that collect the data in the first place. Many of these data holders have business reasons or public mandates to share the data they have, but can’t or only do so in a severely limited manner and through a time-consuming process.
We believe there are technological and policy solutions that can remedy this situation and our white paper attempts to sketch out these solutions in the form of a “datatrust.”
We set out to answer the major questions and open issues that challenge the viability of the datatrust idea.
- Is public access to sensitive personal information really necessary?
- If it is, why isn’t this already a solved problem?
- How can you open up sensitive data to the public without harming the individuals represented in that data?
- How can any organization be trusted to hold such sensitive data?
- Assuming this is possible and there is public will to pull it off, will such data be useful?
- All existing anonymization methodologies degrade the utility of data, how will the datatrust strike a balance between utility and privacy?
- How will the data be collated, managed and curated into a usable form?
- How will the quality of the data be evaluated and maintained?
- Who has a stake in the datatrust?
- The datatrust’s purported mission is to serve the interests of society, will you and I as members of society have a say in how the datatrust is run?
You can read the full paper here.
Comments, reactions and feedback are all welcome. You can post your thoughts here or write us directly at info at commondataproject dot org.