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Sensitive Research Data Management: Guides, Articles and Other Resources

A guide for addressing issues with sharing research data involving human subjects or other sensitive data sets.

Guides

Data Sharing - Articles, Presentations and Reports

  • Flournoy, N. and Hearne, L.B., “Sharing scientific data III: Planning and the research proposal,” IRB: Ethics and Human Research 12, no. 3 (1990): 6–9. http://www.jstor.org/stable/3564108.
  • Hauser, R. M., Weinstein, M., Pool, R., and Cohen, B. (Eds). "Chapter 3: Protecting Privacy and Confidentiality: Sharing Digital Representations of Biological and Social Data." In National Research Council (US) Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. (2010). Washington, D.C.: National Academies Press. Avaialable at http://www.ncbi.nlm.nih.gov/books/NBK50733/ 

  • Piwowar HA, Day RS, Fridsma DB (2007) Sharing Detailed Research Data Is Associated with Increased Citation Rate. PLoS ONE 2(3): e308.
    doi:10.1371/journal.pone.0000308

Tools

There are several tools and products that may be useful for anonymizing data.  This list does not constitute an endorsement of any of these resources and you should closely investigate any resouce before choosing to purchase or make use of it yourself.

  • Spirion - A commercial product designed to prevent data leakage and protect sensitive information.
  • Simple Data Masking - A commercial product that enables the randomisation, substitution, hashing, shuffling, date aging or decryption/encryption of data.
  • Spider - An open source tool from Cornell University for locating sensitive data.  Requires a degree of technical knowledge or the assistance of local tech support to run.  
  • QualAnon - A tool for anonymizing interview transcripts, typed field notes or other qualitative data.  QualAnon uses a name key created by the user with a list of names and corresponding pseudonyms to change identified names into the specified pseudonyms.

Subject Guide

Kendall Roark's picture
Kendall Roark
Contact:
STEW 174
By appointment
765-494-2637