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Board on Research Data and Information
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Board on Research Data and Information
Policy and Global Affairs Division
The National Academies of Sciences, Engineering, and Medicine
500 Fifth Street, NW
Washington, DC 20001

Privacy in a Big Data World
A Symposium of the Board on Research Data and Information
National Academy of Sciences Lecture Room
2100 C Street NW, Washington, DC
September 23, 2013
3:00 pm - 5:30 pm 

“Big data” describes the phenomenon of an explosion in quantities of scientific data available for research. The term is also used to describe the vast increase in personal data available in a digital world. The enormous quantities of data are requiring new terms such as exabytes, zettabytes, and yottabytes, new methods of processing and storage, such as cloud computing, and additional broadband. Big data also implies new ways of thinking about data that emphasize their reuse and repurposing, and the recombination and aggregation of data from multiple sources; these are practices that are often in tension with traditional ideas about privacy and anonymity. Such developments offer unprecedented opportunities to realize scientific advances and economic growth -- if we can sort out the right balances with privacy, and if legal and regulatory constraints do not become intractable barriers.

Data flow across boundaries for both scientific and commercial uses. There are several international and national efforts to enhance data privacy in a big data world, including revisions to the OECD 1980 Privacy Guidelines, the EU General Data Protection Regulation, and proposed revisions in the United States to the Common Rule for the Protection of Human Subjects. These activities impact access and use of data for a wide variety of research purposes. How can we provide adequate privacy protection for individuals without impeding research and innovation? How do these different regulatory approaches to privacy impact national and transnational research? Has society’s perspective on privacy evolved in a digital world, and how may it have to change further in the future?

This Symposium explored current developments in these areas. The co-chair of the Board on Research Data and Information, Clifford Lynch of the Coalition on Networked Information, led the symposium discussion, which began at 3 p.m. on Monday, August 23. The event continued for 2 ½ hours with a mix of short presentations and discussion.

Preliminary Agenda
3:00 pm    Introductory Remarks   [ MP3 ]
   Clifford Lynch, Coalition for Networked Information, and Co-Chair, BRDI
3:10          Session 1 – International and National Approaches to Privacy in a Big Data World
                  Moderator: Clifford Lynch
  1.     OECD Current and Proposed Work on Topic of Privacy and Big Data – Updating the 1980 Privacy Guidelines  [ MP3 ]
 Jade Nester Gray, Acting Special Advisor to the Assistant Secretary, National Telecommunications and
  Information Administration 

  2.     Comparative Approaches to Privacy in the U.S. and European Union and the Impact on the Global Free Flow of Information  [ MP3 ]
 Daniel Weitzner, Director, MIT Decentralized Information Group, MIT Computer Science and Artificial Intelligence Lab

  3.     U.S. Regulatory Approaches to Data Privacy  [ MP3 ]
 Joy Pritts, Privacy Officer, U.S. Department of Health and Human Services

  Moderated panel discussion with audience  [ MP3 ]
4:10          Session 2 – Changing Notions of Privacy
  Moderator: Henry Brady   [ MP3 ]
  1.     Contrasts Between Regulations Governing Federally Funded Research Data and Data for Commercial Use  [ PPT ]  [ MP3 ]
 Deborah Barnard, Director, Office of Research Compliance and Regulatory Affairs, Children’s Hospital of Philadelphia Research
  2.    Changing Landscapes in Privacy in a Big Data World  [ PPT ] [ MP3 ]
          Rebecca Wright, Director, DIMACS, and Professor of Computer Science, Rutgers University
  3.     Privacy: More Than Meets the Eye (Reasoning about privacy in a big data world)  [ PPT ] [ MP3 ]
 Dan Kifer, Assistant Professor, Department of Computer Science and Engineering, Pennsylvania State University
  4.     Anonymization of Data in a Big Data World  [ PPT ] [ MP3 ]
 John Wilbanks, Chief Commons Officer at Sage Bionetworks and Senior Advisor to the National Coordination Office

Moderated panel discussion with audience  [ MP3 ]

5:30        End of symposium; Reception

How to get there by Metro:
  • Take the Orange or Blue Line to Foggy Bottom-GWU metro stop.
  • Turn right when you exit the metro.
  • Walk south down 23rd St, NW for approx 7 blocks.
  • Turn left onto C St, NW (after the State Dept.)
  • Cross 22nd St.
  • The main entrance is in the Front of the building
    (2101 Constitution Ave.).
  • A secondary entrance is located at 2100 C Street
If you are driving, the parking lot entrance is at the intersection of 21st Street and C Street, NW. Parking at the Academy building is on a first-come-first-served basis and cannot be reserved in advance.The parking lot is under partial construction, so spaces are more limited than normal.