Research Data Management Principles, Practices, and Prospects Page: 91
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Dilemmas of Digital Stewardship: Research Ethics and the Problems of Data Sharing 91
Data Likely to Be Recorded in Data Not Likely to Be Recorded
Social Sciences Research
Names Social Security numbers
Geographic designators, including geocodes Telephone and fax numbers
E-mail addresses Biometric identifiers
URLs and IP Numbers Medical records numbers
Full-face photographic images Health plan beneficiary numbers
All elements of dates Account numbers
All ages over 89 Vehicle identifiers and serial numbers
Any other unique identifying number, Certificate/license numbers
characteristics, or codes
Voice recordings
Table 1. Data types typically considered identifying information. This table draws on the
Emory University IRB Guidelines (Emory University IRB 2012, 293), which includes identifiers
that are fairly standard among IRBs.
to computer networks is unusual among professional ethics codes,
which seldom directly address data sharing methods and the vary-
ing risks associated with different procedures for data storage and
transmission (e.g., cloud vs. local storage, private vs. commercial
clouds, encryption methods).
If the purpose of an ethics code is to guide decision making
when values are in conflict, then researchers are receiving very little
support from their professional associations in determining a reason-
able course of action for when and how to share their data. The most
specific guidance is likely to come from the IRB for those research
projects that require its approval (e.g., projects that involve human
participants). IRBs typically have specific guidelines for what is con-
sidered identifying information (Table 1), as well as for how this in-
formation should be protected and managed. The Institutional Review
Board Guidebook, Chapter V, states:
If identifiers are recorded, they should be separated, if possible,
from data and stored securely, with linkage restored only when
necessary to conduct the research. No lists should be retained
identifying those who elected not to participate. Participants
must be given a fair, clear explanation of how information about
them will be handled.
As a general principle, information is not to be disclosed without
the subject's consent. The protocol must clearly state who is
entitled to see records with identifiers, both within and outside
the project. This statement must take account of the possibility of
review of records by the funding agency. (OPRR Reports, Dear
Colleague Letter (December 26, 1984), p.3, quoted in the IRB
Guidebook).1o
Given the kinds of data typically of interest in the social sci-
ences, data sharing mandates may conflict with these guidelines.10 See http://www.hhs.gov/ohrp/archive/irb/irb_guidebook.htm.
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Asher, Andrew; Deards, Kiyomi; Esteva, Maria; Halbert, Martin; Jahnke, Lori; Jordan, Chris et al. Research Data Management Principles, Practices, and Prospects, book, November 2013; Washington, DC. (https://digital.library.unt.edu/ark:/67531/metadc234929/m1/100/: accessed April 23, 2024), University of North Texas Libraries, UNT Digital Library, https://digital.library.unt.edu; .