Data Privacy

Definition

Research data, particularly when containing information about human subjects or health information, may have to be anonymized or safeguarded in very specific ways in order to maintain privacy restrictions. Institutional library collections may also be subject to donor or data privacy restrictions that need to be accounted for. It is likely that every potential stakeholder involved in the process of data preservation will have some specific requirements for security and control, and it will be necessary to place privacy restrictions on data that may contain sensitive information. As custodians of information, librarians can take measures to keep data private such as building privacy policies and implementing security measures to safeguard against potential threats to research data.

The Family Educational Rights and Privacy Act (FERPA), Health Insurance Portability and Accountability Act (HIPAA), and Institutional Review Boards (IRBs) are the most commonly used federally mandated privacy policies. FERPA is a Federal law that protects the privacy of student education records; HIPAA is responsible for protecting the privacy of individually identifiable health information, and IRBs are used for the approval of research activities involving human subjects.

Further Resources

Bardyn TP, Resnick T, Camina SK. (2012).  Translational Researchers’ Perceptions of Data Management Practices and Data Curation Needs: Findings from a Focus Group in an Academic Health Sciences Library(link is external). Journal of Web Librarianship, 6(4):274–87.

Bond SC, Ahmed HO, Hind M, Thomas B, & Hewitt-Taylor J. The Conceptual and Practical Ethical Dilemmas of Using Health Discussion Board Posts as Research Data(link is external). J Med Internet Res, 15(6), e112. doi.org/10.2196/jmir.2435

Cassa CA, Miller RA, & Mandl KD. (2013). A novel, privacy-preserving cryptographic approach for sharing sequencing data(link is external). Journal of the American Medical Informatics Association, 20(1), 69–76. doi.org/10.1136/amiajnl-2012-001366

Drazen JM. (2015). Sharing Individual Patient Data from Clinical Trials(link is external). New England Journal of Medicine, 372(3), 201–202. doi.org/10.1056/NEJMp1415160.

Lagoze C, Block WC, Williams J, Abowd J, & Vilhuber L. (2013). Data Management of Confidential Data(link is external). International Journal of Digital Curation, 8(1), 265–278. doi.org/10.2218/ijdc.v8i1.259

Mai J-E. (2016). Big data privacy: The datafication of personal information(link is external). Information Society, 32(3), 192–199. doi.org/10.1080/01972243.2016.1153010  

Malin BA, Emam KE, & O’Keefe CM. (2013). Biomedical data privacy: problems, perspectives, and recent advances(link is external). Journal of the American Medical Informatics Association, 20(1), 2–6. doi.org/10.1136/amiajnl-2012-001509
 
McGraw D. (2013). Building public trust in uses of Health Insurance Portability and Accountability Act de-identified data(link is external). Journal of the American Medical Informatics Association, 20(1), 29–34. doi.org/10.1136/amiajnl-2012-000936

Ohno-Machado L. (2013). Sharing data for the public good and protecting individual privacy: informatics solutions to combine different goals(link is external). Journal of the American Medical Informatics Association, 20(1), 1–1. doi.org/10.1136/amiajnl-2012-001513
  
Panger G. (2016). Reassessing the Facebook experiment: critical thinking about the validity of Big Data research(link is external). Information, Communication & Society, 19(8), 1108–1126. doi.org/10.1080/1369118X.2015.1093525

Pencarrick Hertzman C, Meagher N, & McGrail KM. (2013). Privacy by Design at Population Data BC: a case study describing the technical, administrative, and physical controls for privacy-sensitive secondary use of personal information for research in the public interest(link is external). Journal of the American Medical Informatics Association, 20(1), 25–28. doi.org/10.1136/amiajnl-2012-001011
 
Shoenbill K, Fost N, Tachinardi U, & Mendonca EA. (2014). Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations(link is external). Journal of the American Medical Informatics Association, 21(1), 171–180. doi.org/10.1136/amiajnl-2013-001694

Stewart C. (2012). Preservation and Access in an Age of E-Science and Electronic Records: Sharing the Problem and Discovering Common Solutions(link is external). Journal of Library Administration, 52(3-4):265–78.

Sweeney L, Crosas M, & Bar-Sinai M. (2015). Sharing Sensitive Data with Confidence: The Datatags System(link is external).

Tenopir C, Allard S, Douglass K, Aydinoglu AU, Wu L, Read E, et al. (2011). Data sharing by scientists: practices and perceptions(link is external). PloS one, 6(6):e21101. 

Tibbo HR, Hank C, Lee C, Clemens R. (2009). Digital Curation: Practice, Promise and Prospects. Proceedings of DigCCurr2009. Chapel Hill, NC: University of North Carolina at Chapel Hill. p. 207.

White R, Horvitz E. (2013). From web search to healthcare utilization: privacy-sensitive studies from mobile data(link is external). Journal of the American Medical Informatics Association, 20(1), 61–68. doi.org/10.1136/amiajnl-2011-000765

Xia W, Heatherly R, Ding X, Li J, & Malin BA. (2015). R-U policy frontiers for health data de-identification(link is external). Journal of the American Medical Informatics Association, 22(5), 1029–1041. doi.org/10.1093/jamia/ocv004

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