Home | News & Events | Events | 2016 Events | Privacy Implications of Research Data: A NISO Symposium


Privacy Implications of Research Data:
A NISO Symposium
Sponsored by the NISO-RDA Joint Interest Group

Sunday, September 11, 2016

8:30 a.m. - 4:30 p.m. (MT)

Governor’s Square 12
Sheraton Denver Downtown Hotel
Denver, Colorado


VIDEO Recordings of the Symposium Posted!

About the Symposium


About the Symposium

Even as the opportunities presented by offering access to and re-use of scientific data sets become more apparent, sharing human subject data in particular is hampered by lack of a framework to address privacy and security concerns. The Research Data Alliance (RDA) and the National Information Standards Organization (NISO) are working to address that challenge through a joint interest group building a global consensus framework that will support both privacy and scientific data sharing.

The generous support of the Sloan Foundation is enabling the RDA/NISO interest group to host a free public symposium in Denver on privacy implications of research data, gathering, sharing and reuse, as a stepping stone towards that goal.

Attendees will hear from experts on the following:

  • The feasibility of balancing research requirements with the need for privacy protections
  • The limits of anonymization in the context of personally identifiable information
  • The demands of security, privacy, and trust
  • Privacy, policy, and data governance in university research practice
  • Privacy and legal frameworks in the European Union

Attend in-person in Denver or remotely through a live stream.  You may also register to receive access to the recorded version of the event. (All in-person and remote attendees will also receive access to the recording.)

Please RSVP here.


Recording of Morning Session #1 (Content starts at 12:42)


 Recording of Morning Session #2


Recording of Afternoon Session #3


Recording of Afternoon Session #4



8:30am - 9:00am  Continental Breakfast

9:00am – 9:30am Welcome and Introduction to the Topic

Confirmed Speaker: Todd Carpenter, Executive Director, NISO

Carpenter - Privacy Implications Research Data - Intro from National Information Standards Organization (NISO)

9:30am – 10:30am Keynote: Can We Simultaneously Support Both Privacy and Research? Informed Consent and Data Sharing In a Mobile World

Confirmed Keynote Speaker: John Wilbanks, Sage BioNetworks

Wilbanks Can We Simultaneously Support Both Privacy & Research? from National Information Standards Organization (NISO)

Mobile technologies have the potential to revolutionize both the way in which individuals monitor their health as well as the way researchers are able to collect frequent, yet sparse data on participants in clinical studies. In order for data from these devices to have maximal impact in a research setting however, the development of systems to collect, manage, and broadly share these data is essential. Possibly more important are the social constructs on which these systems need to be built to allow maximal utility to come from these data while minimizing adverse impact on individual participants. More specifically, the union of these systems and constructs must be an ecosystem build upon trust. We will present one such ecosystem focused on putting the participant at the center of the data collection: specifically by acknowledging possible risks to both individual participants as well as sub-populations of participants, providing opt-in settings for broad data sharing, and the development of an open research ecosystem built upon a social contract between researchers and research participants. A case study of one such mHealth study, leveraging Apple’s ResearchKit framework, will be presented and discussed.

John Wilbanks is the Chief Commons Officer at Sage Bionetworks. Previously, Wilbanks worked as a legislative aide to Congressman Fortney “Pete” Stark, served as the first assistant director at Harvard’s Berkman Center for Internet & Society, founded and led to acquisition the bioinformatics company Incellico, Inc., and was executive director of the Science Commons project at Creative Commons. In February 2013, in response to a We the People petition that was spearheaded by Wilbanks and signed by 65,000 people, the U.S. government announced a plan to open up taxpayer-funded research data and make it available for free. Wilbanks holds a B.A. in philosophy from Tulane University and also studied modern letters at the Sorbonne.

10:30am-10:45am Group discussion of balancing privacy and research possibilities and identifying potential work topics for the RDA/NISO WG

10:45am – 11:15am Break

11:15am – 11:45am Expert Voice: Perfectly Anonymous Data is Perfectly Useless Data
This 30-minute program segment is intended to present the needs of the research community for data that must include some degree of personally identifiable information. The talk is expected to touch on some of the following:
• Who Is Being Protected and from what risks?
• Observable behavior prevents complete protection;
• Necessity of some identifiable elements in utilization of data (participant ids, demographic variables, dates, geographic location
• Potential Problems for Science Resulting from Shielded or Missing Data

Confirmed: Micah Altman, Massachusetts Institute of Technology

Altman - Perfectly Anonymous Data is Perfectly Useless Data from National Information Standards Organization (NISO)

Dr. Micah Altman is Director of Research and Head/Scientist, Program on Information Science for the MIT Libraries, at the Massachusetts Institute of Technology. Dr Altman conducts work primarily in the fields of social science, information privacy, information science and research methods, and statistical computation -- focusing on the intersections of information, technology, privacy, and politics; and on the dissemination, preservation, reliability and governance of scientific knowledge.

11:45am – 12:00noon Group discussion of challenges related to anonymization of data to support privacy. Group consideration of the boundaries of anonymization guidance

12:00noon – 12:30pm Expert Voice: Security, Privacy and Trust

This segment of the program addresses three related issues arising in the context of housing and potential re-use of data across a range of information systems. Given these requirements, how can information systems and services adequately offer protection? The talk is expected to touch on some of the following points:
• Controlling Access to Data (Security)
• Place of Encryption in Open Science
• Trust Management / Information Assurance Policies
• Protections/Parameters for mining of personal data

Confirmed Speaker: Paul Burton, Professor of Infrastructural Epidemiology, University of Bristol

Burton - Security, Privacy and Trust from National Information Standards Organization (NISO)

Paul Burton is Professor of Infrastructural Epidemiology at the University of Bristol. With Madeleine Murtagh (Professor of Social Studies of Health Science) he co-leads the transdisciplinary D2K (Data to Knowledge) Research Group. Historically, his own research has subsumed three major themes: (1) methods research in biostatistics and genetic epidemiology – particularly generalized linear models (GLMs) and generalized linear mixed models (GLMMs), with a focus on using Bayesian approaches to model fitting and statistical inference; (2) applied researchin genetic epidemiology and complex disease epidemiology; and, most recently, (3)infrastructural development in contemporary bioscience, including theory and practice pertaining to the design, set up and harmonization of major biobanks, and the challenges and opportunities presented by the need to ensure secure, streamlined access to national and international repositories of data and biosamples.    

12:30pm – 12:45pm Group discussion of security issues related to research data. Group discussion of overlap between purely security versus privacy issues, potential partnership with Data Security IG

12:45pm – 1:45pm Lunch (Provided)

1:45pm – 2:15pm Expert Voice: Privacy, Policy, and Data Governance in the University

Data about individuals are valuable institutional assets. Their value increases, both to the University and to external third parties, as they accumulate and can be reused and remixed in new ways. “Big data” and predictive analytics define a new generation of opportunities and risks across the institution, whether in student success, research, precision medicine, or administrative effectiveness. Risks of breach, misuse, or misinterpretation of information about our community also increase. Data that may not appear to be sensitive at the time of collection, such as student traffic to a course website, may become extremely rich when combined with other data such as a student’s grades, medical records, library usage, food purchases, and social media habits. Similarly, information that is nominally public, such as a faculty member’s bibliography of publications, can become extremely sensitive when combined with proprietary analytics used to rank individuals, departments, universities, and countries. As data, metadata, algorithms, and analytics are shared within and between universities, and with third parties, the complexity of data governance increases. UCLA, a long-time leader in privacy policy and in joint faculty-administrative governance of information technology services, will release the findings of the Data Governance Task Force in June, 2016. https://ccle.ucla.edu/course/view/datagov. This talk will frame the implications of those findings for universities and higher education.

Confirmed: Christine Borgman, Distinguished Professor & Presidential Chair in Information Studies, UCLA

Borgman - Privacy, Policy and Data Governance in the University from National Information Standards Organization (NISO)

Christine Borgman is a professor and presidential chair in Information Studies in the UCLA Graduate School of Education & Information Studies. She earned a BA degree in Mathematics from Michigan State University, a Master of Library Science from the University of Pittsburgh and a PhD in Communication from Stanford.

Christine L. Borgman is Distinguished Professor and Presidential Chair in Information Studies at UCLA. Prof. Borgman is the author of more than 200 publications in information studies, computer science, and communication, including three sole-authored monographs. Her newest book, Big Data, Little Data, No Data: Scholarship in the Networked World, was published by MIT Press in 2015. Scholarship in the Digital Age: Information, Infrastructure, and the Internet (MIT Press, 2007) and From Gutenberg to the Global Information Infrastructure: Access to Information in a Networked World (MIT Press, 2000) each won the Best Information Science Book of the Year award from the American Society for Information Science and Technology (ASIST).

A second area of interest is analytical work on the changing nature of scholarship in an environment of ubiquitous computer networks and digital information.

2:15 – 2:30pm Group discussion of privacy policy issues specific to research data and the relationship with the administrative governance of the academy

2:30 – 3:00pm Expert Voice: Security, Solidarity, Science and the rule of law: Open Science and privacy protection in transnational cooperation

Worldwide, research organizations and governments support the idea of open science. Data driven science and as part of that the making available of research data for reuse is one of the hallmarks of open science. There is also general agreement that privacy protection laws are a major limitation for sharing data. In an international context complexity is added by differences in the applicable law.

The long term study German National Cohort - supported by Helmholtz Association - has provoked discussions concerning the relation of public interest in research and privacy protection. The recent Court of Justice of the European Union ruling declaring invalid the EU Commission’s US Safe Harbour Decision is seen as a game changer by many in the international transfer of personal data stemming from persons in the EU.

The presentation will illustrate key principles of privacy protection in Europe which set the scope for transferring personal data internationally thereby focussing on the new EU data protection Directive and Regulation and the above mentioned ruling

Confirmed: Christoph Bruch, Helmholtz Association of German Research Centres.

Bruch - Security, Solidarity, Science from National Information Standards Organization (NISO)

Dr. Christoph Bruch is senior advisor for Strategy at Helmholtz Open Science Coordination Office. His focus is on legal aspects concerning research publications and research data. He is a member of the Working Group on Legal Aspect of the German Priority Initiative "Digital Information" and of the working group of legal experts of the European Association of Research and Technology Organisations. He studied political sciences at Johan Wolfgang Goethe University in Frankfurt am Main and Free University Berlin. Before joining the Helmholtz Association, he held professional positions at the Free University Berlin, the German Institute for Urban Studies, and Max Planck Society. In an honorary capacity he is advocating access to knowledge via his engagement with Coalition for Action "Copyright for Education in Research", European Network for Copyright in support of Education and Science.

3:00pm – 3:15pm Group discussion of the worldwide privacy framework issues. How should the IG deal with international nature of our work

3:15pm -- 3:45pm Afternoon Break

3:45pm – 4:30pm Roundtable Discussion (Moderated by Bonnie Tijerina, Data & Society Research Fellow, Data & Society Research Institute)

Tijerina-RDA-NISO-Task Groups-sept11 from National Information Standards Organization (NISO)


This is a free event; however, we would like to get an estimated account of attendance. Please RSVP to attend the meeting.

Location Information

Meeting Location

Sheraton Denver Downtown Hotel
1550 Court Place, Denver, CO 80202
(303) 893.3333

Hotel Information
The Sheraton Denver Downtown Hotel offers 1,231-room hotel plus 82 luxurious suites on site, and it is recommended that you make your reservation directly with the hotel as space is limited. Please visit the website here.


If you have any questions, please call the NISO Office at +1.301.654.2512 or e-mail at joneill@niso.org.