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The International Research Collaborations Working Group of the Government-University-Industry Research Roundtable of the U.S. National Academies of Sciences, Engineering, and Medicine hosted a workshop on “Data Matters: Ethics, Data, and International Research Collaboration in a Changing World,” on March 14-16, 2018, at the National Academy of Sciences Building in Washington, DC.

The workshop explored the changing opportunities and risks of data management and use across disciplinary domains to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible.

This workshop is the third in a series examining relevant aspects of design and execution of international research collaborations. It will build on previous activities that have defined general features of successful international collaborations, starting with a workshop held in 2010 (Examining Core Elements of International Research Collaboration) and a follow-on event in 2013 centered on the role of culture (Culture Matters: International Research Collaboration in a Changing World). 

Read the meeting summary: Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop

Wednesday, March 14, 2018
Day 1: Data  Matters
3:30-5:30 Introduction and Framing the Issues

International research agreements can serve many purposes, but data is essentially always involved in these collaborations. The kinds of data in play within international research agreements may range from financial and consumer data, earth and space data, population behavior and health data, as well as specific project-generated data. The uses of the data are various and require accounting for the impact of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality and security. Ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed and will be the focus of this meeting.

  • Barbara Mittleman, Chief Strategy Officer of WayMark Systems
  • Arturo Pizano, University Relations Program Manager at Siemens Corporate Technology
  • Susan Sloan, Director of GUIRR at the National Academies of Sciences, Engineering, and Medicine
  • Jake Metcalf, Researcher at the Data & Society Research Institute
  • Ghassem Asrar, Director of the Joint Global Change Research Institute of the Pacific Northwest National Laboratory
5:30-7:30 pm
 Reception and Keynote
Sponsored by Elsevier
  • Simson Garfinkel, Senior Computer Scientist for Confidentiality and Data Access at the U.S. Census Bureau
  • Moderator: Arturo Pizano
Thursday, March 15, 2018
Day 2: Privacy, Security, and Confidentiality of Data Sharing and Storage

8:00-10:30 am


Session 1: The Upside and the Downside: Protections, Incentives, Disincentives, and Risks

  General theoretical issues to consider when developing international research agreements to establish a common level of understanding among participants about the landscape of concerns and principles within agreements that pertain to privacy, security, and confidentiality of data sharing and storage.

Legal and Technical Concerns (8:15-9:15 am)
  • Ruxandra Draghia, Vice President of Public Health and Scientific Affairs at Merck Global Vaccines
  • Nick Feamster, Professor of Computer Science at the Center for Information Technology Policy at Princeton University
  • Moderator: Mark Seiden, Director of Information Security at 1010data and Security Advisor at Internet Archive
Political and Economic Concerns (9:15-10:30 am)
  • Kristin Tolle, Director of the Data Science Initiative at Microsoft Research Outreach
  • Brad Fenwick, Senior Vice President of Global Strategic Alliances at Elsevier
  • Stuart Haber, Chief Scientist at Auditchain 
  • Moderator: Mark Seiden
10:45 am-12:15 pm Session 2: Domain-Specific Examples
  A panel to discuss domain-specific challenges to collaboration. Examples addressed the issues discussed in the general session that immediately precede the domain discussions and will allow for a ‘compare and contrast’ across issue-specific domains, to seed the discussion in the breakout groups. 
  • Joe Pelton, Emeritus Director of the Space and Advanced Communications Research Institute at the George Washington University
  • Eric Perakslis, Chief Science Officer at Datavant
  • Shelley Stall, Director for Data Programs at the American Geophysical Union
  • Jim Shultz, Founder and Director of the Center for Disaster and Extreme Event Preparedness Center at the University of Miami School of Medicine
  • Nancy Potok, Chief Statistician of the United States
  • Moderator: Ruxandra Draghia
12:15-1:45 pm Session 3: Lunch and Plenary
  A presentation on "Sharing Data Responsibly: International, Interdisciplinary, and Intersectional Entanglements."  
  • Madeleine Murtagh, Professor of Sociology and Bioethics at Newcastle University
  • Moderator: Susan Sloan
1:45-3:45 pm Session 4: Breakout Groups - Domain-Specific Examples
  Breakout group discussions to explore important considerations when crafting agreements that include data sharing plans in either a domain-specific manner or in a more general/generalizable manner. Participants were asked to consider a series of discussion questions and scenarios to frame the issues for discussion.
4:00-5:30 pm Session 5: Privacy, Security, Equity, and Confidentiality of Data Sharing and Storage
  Panel discussion to consider the purpose-specific, population-specific, data type-specific concerns on privacy, security, confidentiality, and resilience with consideration to regional concerns.
  • Chiekh Mbow, Executive Director of START
  • Roger-Mark De Souza, President and CEO of Sister Cities
  • Moderator: Andreas Rechkemmer, Professor and American Humane Endowed Chair of the Graduate School of Social Work at the University of Denver
 5:30-7:00 pm Reception
Sponsored by Siemens Corporation
Friday, March 16, 2018
Day 3: Changing Technology and Social Landscape 
8:15-9:00 am 

Session 1: New and Emerging Technologies: Internet of People and Things

  A presentation to consider concerns and opportunities for the development of the Internet of Things in the context of privacy, security, and confidentiality challenges. 
  • Sanjay Tripathi, Vice President of Growth Initiatives and Strategic Partnerships at Watson IoT, IBM
  • Moderator: Tilak Agerwala, IBM Emeritus
9:00 am-12:15 pm Session 2: Breakout Groups - Changing Technology and Social Landscape
  Small group discussions and report-outs on the possible actions, frameworks, networks, and institutional governance necessary to enable guidance on the handling of data collection and usage with respect to emerging technologies.
1:00-2:30 pm Session 3: New and Emerging Technologies: Artificial Intelligence 
  A panel discussion to consider future technological breakthroughs in AI and the socio-political and economic challenges of adoption and governance. How can international research collaborations be structured effectively now and in the future to facilitate technological adoption and governance across boundaries with specific regard to artificial intelligence and machine learning?
  • John Markoff, Former Senior Technology Writer for The New York Times
  • Dario Gil, Vice President of AI and IBM Q
  • Melvin Greer, Chief Data Scientist for the Public Sector, Americas, at Intel Corporation
  • Moderator: Lorna Jean Edmonds, Vice Provost for Global Affairs and International Studies at Ohio University
2:30-3:30 pm Session 4: Open Discussion and Next Steps
  Open discussion and opportunity to contribute input on the nexus of data and ethics within international research collaborations. Is there further need to establish long-standing working groups on data and ethics for international research collaborations?