NDLI: Building Secure Platforms for Research on Human Subjects: The Importance of Computer Scientists

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Building Secure Platforms for Research on Human Subjects: The Importance of Computer Scientists

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Building Secure Platforms for Research on Human Subjects: The Importance of Computer Scientists

Content Provider	ACM Digital Library
Author	Lane, Julia Ingrid
Abstract	Businesses and government are using new approaches to decision-making. They are exploiting new streams of (mostly) digital personal data, such as daily transaction records, web-browsing data, cell phone location data, and social media activity; and they are applying new analytical models and tools. Social science researchers, who are not trained in the stewardship of these new kinds of data, must now collect, manage and use them appropriately. There are many technical challenges: disparate datasets must be ingested, their provenance determined and metadata documented. Researchers must be able to query datasets to know what data are available and how they can be used. Datasets must be joined in a scientific manner, which means that workflows need to be traced and managed in such a way that the research can be replicated(Lane, 2017). Computer scientists' expertise is of critical value in many of these areas, but of greatest interest to this group is the facilities in which data on human subjects are stored. The data must be securely housed, and privacy and confidentiality must be protected using the best approaches available. The access and use must be documented to meet the needs of data providers. Yet the technology currently used to provide access to sensitive data is largely artisanal and manual. The stewardship restrictions placed on the use of confidential administrative data prevent the use of best practices for research data management. As a result, links between data sources are rarely validated, results often are not replicated, and connected datasets, results, and methods are not accessible to subsequent researchers in the same field. This is where computer scientists' expertise can come to play in building approaches that will enable sensitive data from different sources to be discovered, integrated, and analyzed in a carefully controlled manner, and that will, furthermore, allow researchers to share analysis methods, results, and expertise in ways not easily possible today.
Starting Page	1
Ending Page	1
Page Count	1
File Format	PDF
ISBN	9781450346993
DOI	10.1145/3078597.3078618
Language	English
Publisher	Association for Computing Machinery (ACM)
Publisher Date	2017-06-26
Publisher Place	New York
Access Restriction	Subscribed
Subject Keyword	Privacy Secure data Confidentiality Social science
Content Type	Text
Resource Type	Article

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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