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Some reflections on research data confidentiality, privacy, and curation by Limor Peer

Some reflections on research data confidentiality, privacy, and curation

Limor Peer

Maintaining research subjects’ confidentiality is an essential feature of the scientific research enterprise. It also presents special challenges to the data curation process. Does the effort to open access to research data complicate these challenges?

A few reasons why I think it does: More data are discoverable and could be used to re-identify previously de-identified datasets; systems are increasingly interoperable, potentially bridging what may have been insular academic data with other data and information sources; growing pressure to open data may weaken some of the safeguards previously put in place; and some data are inherently identifiable

But these challenges should not diminish the scientific community’s firm commitment to both principles. It is possible, and desirable, for openness and privacy co-exist. It will not be simple to do, and here’s what we need to keep in mind:

First, let’s be clear about semantics. Open data and public data are not the same thing. As Melanie Chernoff observed, “All open data is publicly available. But not all publicly available data is open.” This distinction is important because what our community means by open (standards, format) may not be what policy-makers and the public at large mean (public access). Chernoff rightly points out that “whether data should be made publicly available is where privacy concerns come into play. Once it has been determined that government data should be made public, then it should be done so in an open format.” So, yes, we want as much data as possible to be public, but we most definitely want data to be open.

Another term that could be clarified is usefulness. In the academic context, we often think of data re-use by other scholars, in the service of advancing science. But what if the individuals from whom the data were collected are the ones who want to make use of it? It’s entirely conceivable that the people formerly known as “research subjects” begin demanding access to, and control over, their own personal data as they become more accustomed to that in other contexts. This will require some fresh ideas about regulation and some rethinking of the concept of informed consent (see, for example, the work of John Wilbanks, NIH, and the National Cancer Institute on this front). The academic community is going to have to confront this issue.

Precisely because terms are confusing and often vaguely defined, we should use them carefully. It’s tempting to pit one term against the other, e.g., usefulness vs. privacy, but it may not be productive. The tension between privacy and openness or transparency does not mean that we have to choose one over the other. As Felix Wu says, “there is nothing inherently contradictory about hiding one piece of information while revealing another, so long as the information we want to hide is different from the information we want to disclose.” The complex reality is that we have to weigh them carefully and make context-based decisions.

I think the IASSIST community is in a position to lead on this front, as it is intimately familiar with issues of disclosure risk. Just last spring, the 2012 IASSIST conference included a panel on confidentiality, privacy and security. IASSIST has a special interest group on Human Subjects Review Committees and Privacy and Confidentiality in Research. Various IASSIST members have been involved with heroic efforts to create solutions (e.g., via the DDI Alliance, UKDA and ICPSR protocols) and educate about the issue (e.g., ICPSR webinar , ICPSR summer course, and MANTRA module). A recent panel at the International Data Curation Conference in Amsterdam showcased IASSIST members’ strategies for dealing with this issue (see my reflections about the panel).

It might be the case that STEM is leading the push for open data, but these disciplines are increasingly confronted with problems of re-identification, while the private sector is increasingly being scrutinized for its practices (see this on “data hops”). The social (and, of course, medical) sciences have a well-developed regulatory framework around the issue of research ethics that many of us have been steeped in. Government agencies have their own approaches and standards (see recent report by the U.S. Government Accountability office). IASSIST can provide a bridge; we have the opportunity to help define the conversation and offer some solutions.

In search of: Best practice for code repositories?

I was asked by a colleague about organized efforts within the economics community to develop or support repositories of code for research.  Her experience was with the astrophysics world which apparently has several and she was wondering what could be learned from another academic community.  So I asked a non-random sample of technical economists with whom I work, and then expanded the question to cover all of social sciences and posed the question to the IASSIST community. 

In a nutshell, the answer seems to be “nope, nothing organized across the profession” – even with the profession very broadly defined.  The general consensus for both the economics world and the more general social science community was that there was some chaos mixed with a little schizophrenia. I was told there are there are instances of such repositories, but they were described to me as “isolated attempts” such as this one by Volker Wieland:  http://www.macromodelbase.com/.  Some folks mentioned repositories that were package or language based such as R modules or SAS code from the SAS-L list or online at sascommunity.org.

Many people pointed out that there are more repositories being associated with journals so that authors can (or are required to) submit their data and code when submitting a paper for publication. Several responses touched on this issue of replication, which is the impetus for most journal requirements, including one that pointed out a “replication archive” at Yale (http://isps.yale.edu/research/data).  I was also pointed to an interested paper that questions whether such archives promote replicable research (http://www.pages.drexel.edu/~bdm25/cje.pdf) but that’s a discussion for another post.

By far, the most common reference I received was for the repositories associated with RePEc (Research Papers in Economics) which offers a broad range of services to the economic research community.  There you’ll find the IDEAS site (http://ideas.repec.org/) and the QM&RBC site with code for Dynamic General Equilibrium models (http://dge.repec.org/) both run by the St. Louis Fed.

I also heard from support folks who had tried to build a code repository for their departments and were disappointed by the lack of enthusiasm for the project. The general consensus is that economists would love to leverage other people’s code but don’t want to give away their proprietary models.  They should know there is no such thing as a free lunch! 

 I did hear that project specific repositories were found to be useful but I think of those as collaboration tools rather than a dissemination platform.  That said, one economist did end his email to me with the following plea:  “lots of authors provide code on their websites, but there is no authoritative host. Will you start one please?”

/san/

North American DDI Conference April 2013

Registration is now open for NADDI 2013 (http://www.ipsr.ku.edu/naddi/). The North American Data Documentation Initiative Conference (NADDI) is an opportunity for those using DDI and those interested in learning more about it to come together and learn from each other. Patterned after the successful European DDI conference (EDDI), NADDI 2013 will be a two day conference with invited and contributed presentations. This conference should be of interest to both researchers and data professionals in the social sciences and other disciplines. Training sessions will follow the conference. One focus of the first year's conference will be on the use of DDI by individual research teams through the data lifecycle.  

Please note that thanks to the generous support of the Alfred P. Sloan Foundation, a limited number of reduced rate registrations for graduate students are available.

 

Our keynote speaker will be Dr. Jay Greenfield of Booz Allen Hamilton where he is the semantic architect for a DDI Lifecycle based metadata system that supports the National Children's Study (NCS).

 

The conference will be held in the Kansas Union at the University of Kansas on April 2 and 3 2013. An opening night reception will be held April 1, and workshops will be held on April 4.

 

The call for papers is also now open through January 31, 2013.

 

For more information visit the conference web site at http://www.ipsr.ku.edu/naddi/ or email naddi@ku.edu .

40 years of IASSIST Conferences: Toronto to host IASSIST 2014

IASSIST Members,

I'm pleased to announce that IASSIST's 40th anniversary conference in 2014 has been awarded to the city where it all started - Toronto, Canada!

Come join us to celebrate June 3-6, 2014, where local hosts from Ryerson University, the University of Toronto, and York University are looking forward to quoting Tourism Toronto's greeting of "Welcome to Toronto! We've been expecting you!"

Meanwhile, our friends at GESIS - Leibniz Institute for the Social Sciences are gearing up to host IASSIST 2013 in Cologne, Germany from May 28 –31.  The theme of this year's conference is "Data Innovation:  Increasing Accessibility, Visibility, and Sustainability."  Stay tuned for conference acceptances notices; they will be delivered by February 5.  http://www.iassist2013.org/iassist-2013-home/

Finally, I'm currently accepting proposals for IASSIST 2015 and beyond.  If your organization is interested in hosting a future IASSIST conference, please drop me a note; you will find more information about hosting at http://www.iassistdata.org/conferences/hosting.html.

Bis Köln,

Bill Block

IASSIST President

(U.S.) C2ER offering Basic Analyst training in March in DC

 

The Council for Community and Economic Research will be offering Basic Analyst Training in March in Washington, DC.  Expensive reg, but looks interesting.

 Register

(Limited seats available)

The purpose of this training is to enhance the knowledge, skills and abilities of those new to community and economic development research.  This training provides an overview of key data sources and effective techniques to conduct research in support of economic development strategies.  Participants will discover that while there is lots of data, focusing on a few important elements and using a few proven techniques can provide tremendous insight into the local economic condition and monitoring progress over time.  Training participants also engage in hands-on exercises to find and analyze data within a framework of answering practical, real-world questions that policymakers and practitioners encounter.  For example, when asked to perform quality of life benchmarking, track local trends, or develop information in support of business recruitment, industry cluster building, economic impact assessments, incentive awards, and planning efforts.  Ways to effectively communicate the results from this research to plicy leaders and practitioners are covered. Learn more here.

Participants will learn:

  • Important Data Sources by Topic Area
    • Business & Employment
    • Consumer Activity
    • Demographic
    • Education
    • Residential and Commercial Real Estate
    • Tax Structure & Incentives
    • Transportation & Utilities
    • Quality of Life
    • Workforce
  • Basic Analytic Techniques
  • Basic Industry & Cluster Analysis
  • Business Location Factors
  • Principles of Economic & Fiscal Impact Analysis
  • Primary Data Collection & Survey Methodologies
  • Key Customers & Their Information Needs

Instructors:
Patty Silverstein, President, Development Research Partners
Martin Romitti, Senior Vice President, Center for Regional Economic Competitiveness

Registration Fees:
Before March 1, 2012
C2er Members/LMI Training Institute Member States* - $650
Non-Members - $780

After March 1, 2012
C2er/LMI Training Institute Members* - $780
Non-Members - $935

*Member rates are available to LMI Training Institute Member State staff and C2ER Members. 

New members may obtain member rates by including their membership application and payment with their registration. Learn more about becoming a C2ER Mmeber here.

For registration, course content, or logistical questions, please contact Spencer Abrams (703) 522-4980 x1027.

The Denton Declaration: An Open Data Manifesto

On May 22, 2012 at the University of North Texas (UNT), a group of technologists, librarians, scholars, researchers, university administrators, and other stakeholders gathered to discuss and articulate best practices and emerging trends in research data management. This declaration bridges the converging interests of these stakeholders and promotes collaboration, transparency, and accountability across organizational and disciplinary boundaries. Declarations that emerged included the following:

  • Open access to research data is critical for advancing science, scholarship, and society.
  • Research data, when repurposed, has an accretive value.
  • Publicly funded research should be publicly available for public good.
  • Transparency in research is essential to sustain the public trust.
  • The validation of research data by the peer community is an essential function of the responsible conduct of research.
  • Managing research data is the responsibility of a broad community of stakeholders including researchers, funders, institutions, libraries, archivists, and the public.

For more information, see the web page of the Denton Declaration.

IASSIST Fellows Application Form 2013

The IASSIST Fellows Program is pleased to announce that it is now accepting applications for financial support to attend the IASSIST 2013 conference in Cologne [http://www.iassist2013.org/], from data professionals who are developing, supporting and managing data infrastructures at their home institutions.

It should be noted that funding is not intended to cover the entire cost of attending the conference and that the applicant’s home institution must provide some level of financial support to supplement an IASSIST Fellow award. Strong preference will be given to first time participants and applicants from those countries currently with insufficient representation at IASSIST. Only fully completed applications will be considered. Applicants submitting a paper for the conference will be given priority consideration for funding.

You may apply for funding via this form.The deadline for applications is the 31st of January 2013.

For more information, to apply for funding or nominate a person for a Fellowship, please send an email to the Fellows Committee Co-chairs, Luis Martínez-Uribe (lmartinez@march.es) and Stuart Macdonald (stuart.macdonald@ed.ac.uk).

If you need further information please let us know
Best wishes,

Luis Martinez-Uribe and Stuart Macdonald
IASSIST Fellows Committee Co-chairs

ICPSR Webinar on working with IRB's

For those of you who follow the IASSIST Interest Group on Human Subjects Review Committees and Privacy and Confidentiality in Research, you might be interested in this webinar:

Amy Pienta and Kaye Marz of ICPSR's National Addiction and HIV Data Archive Program will present a webinar on Nov. 28 titled "Navigating Your IRB to Share Research Data."

They will share guidelines for working with Institutional Review Boards to release data that may contain sensitive information, such as studies on substance abuse. This session will be relevant both to older data collections, which may not have been designed with sharing in mind, as well as newer studies that may have more complex designs. Please join us by reserving a seat at https://www2.gotomeeting.com/register/225075386.

Now Accepting Proposals for IASSIST 2013

IASSIST 2013 will be hosted by GESIS – Leibniz Institute for the Social Sciences at Maternushaus in Cologne, Germany from May 28-31.

The Conference Website can be accessed here: http://www.iassist2013.org/iassist-2013-home/

As announced previously, the theme of this year’s conference is Data Innovation: Increasing Accessibility, Visibility and Sustainability

This theme reflects recent efforts across the globe by the largest government agencies down to the smaller independent research units to make data (be it survey, administrative, geospatial, or scientific) more open, accessible and understandable for all.

With an ever-increasing availability of new technologies offering unparalleled opportunities to sustainably deliver, share, model and visualize data, we anticipate that there is much to share with and much to learn from one another.  Interdisciplinarity is a large part of where innovation comes from, and we hope to receive submissions from those in the social sciences, humanities, sciences, and computer science fields.

We welcome submissions on the theme outlined above, and encourage conference participants to propose papers and sessions that would be of interest to a diverse audience. In order to make session formation and scheduling more streamlined, we have created three distinct tracks.  If you are not sure where your submission fits, or feel that it fits into more than one track, that’s perfectly fine. Please do still make your submission, and if accepted, we will find an appropriate fit.

Online submission forms and guidelines for BOTH conference content and workshops are be found here: http://www.iassist2013.org/conference/calls/

NOTE: The top of the page is for sessions/papers/posters/round tables/pecha kuchas the bottom is for workshops – please note that the submission forms are completely separate.

All submissions are due by December 5, 2012.  Notification of acceptance will be made by February 5, 2012

Questions about session/paper submissions may be sent to iassist.twentythirteen@gmail.com
Questions about workshop submission may be sent to the Workshop Coordinator, Lynda Kellam at lmkellam@uncg.edu

Social Sciences Librarian

Position: Social Sciences Librarian
Available: January 1, 2013

The University of North Carolina at Chapel Hill seeks a creative, enthusiastic, and collaborative Social Sciences Librarian to join the Davis Library Research and Instructional Services Department as the Subject Librarian for the departments of Sociology and Political Science. The Social Sciences Librarian will apply state of the art technology to reference and research work, innovative outreach, evolving collection development, and dynamic data services.

The Social Sciences Librarian will develop and maintain high quality outreach to the faculty and students in departments in the Social Sciences, primarily the departments of Sociology and Political Science; create and deliver innovative and effective instructional resources (workshops, class sessions, course pages, research guides) to enhance learning and research skills; participate in general and specialized reference services (in-person consultations, phone, email, chat) including some weekend work; and collaborate with other librarians to provide data services, concentrating on social science resources including economic and international data sets.

The individual in this position will also select materials relevant to Sociology and Political Science for library purchase, ensuring collections in these areas that meet the University's research and curricular needs; and serve on the Social Sciences collection development team, which collaborates in the evaluation and selection of resources for library purchase.

Librarians at UNC are expected to serve on committees and task forces as needed; be actively involved with local library consortia; participate in regional, national, or international professional and scholarly organizations; and maintain an awareness of emerging research tools, methodologies, and trends in scholarly communication.

The successful candidate will join a vibrant and service-oriented department that supports teaching and research in the humanities and social sciences. The person will report to the Head of the Subject Specialists Section of Davis Research and Instructional Services. The department comprises 14 librarians, 4 support staff, and several student assistants and includes GIS, Data Services, and Government Documents.

Qualifications

Required:
ALA-accredited master's degree in library or information science. Background or experience in the social sciences. Excellent verbal and written communication skills. Experience teaching, training or providing instruction. Strong time management and organizational skills, with an ability to set priorities. Commitment to supporting a diverse user population and an ability to work collaboratively and cooperatively with a diverse group of colleagues.

Preferred:
Advanced degree in a social science discipline. Background or experience in the fields of sociology and/or political science. Experience in an academic library. Experience providing outreach services in a subject specialty. Working knowledge of RefWorks and EndNote. Working knowledge of statistical software packages such as SPSS, STATA, SAS or similar products. Experience using data in the social sciences.

The University and The Libraries
The University of North Carolina at Chapel Hill is the country's oldest state university. UNC Chapel Hill has an enrollment of approximately 29,000 students, employs more than 3,500 members of the faculty, and offers 69 doctoral degrees as well as professional degrees in dentistry, medicine, pharmacy and law. Library collections include over 6.5 million volumes. The Library is a member of the Association of Research Libraries and the Center for Research Libraries. Together with the libraries at Duke University, North Carolina Central University, and North Carolina State University, the members of the Triangle Research Libraries Network (TRLN) provide services and collections to their students, faculty, and staff in support of the education, research, and service missions of the universities.

The University Library invests proudly in its employees, strives to create a diverse environment of respect and collaboration, and encourages vision and innovation.

The Region
The Triangle region is one of the most desirable places to live and work in North America and offers its residents a wide array of recreational, cultural, and intellectual activities. The mountains or the seashore are less than half day's drive from Chapel Hill.

The University of North Carolina is an equal opportunity employer and is strongly committed to the diversity of our faculty and staff.

Salary and Benefits
This is a twelve-month academic librarian appointment; salary is commensurate with qualifications and experience. Standard state benefits of annual leave, sick leave, and State or optional retirement plan. At the University of North Carolina at Chapel Hill, librarians enjoy the benefit of academic status and are members of the faculty council.

Deadline for Application
Review of applications will begin on October 1, 2012. Applications will be accepted until the position is filled, but preference will be given to applications received by the begin review date.

To Apply:
Please visit http://unc.peopleadmin.com/postings/8226 and complete the online application. Please include a letter of application, a resume and the name, mailing address, email address, and telephone number of three professional references, one of which must be a current supervisor. Additionally, please indicate in your cover letter where you first learned of this position.

  • Iassist Quarterly

    Publications Welcome to the special double issue 3 & 4 of the IASSIST Quarterly (IQ) volume 36 (2012). This special issue addresses the organizational dimension of digital preservation as it was presented and discussed at the IASSIST conference in May 2013 in Cologne, Germany.

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