Protecting Participants and Facilitating Social and Behavioral Sciences Research (2003) / Chapter Skim
Currently Skimming:
Appendix E: Confidentiality and Data Access Issues for Institutional Review Boards
Appendix E: Confidentiality and Data Access Issues for Institutional Review Boards
Pages 235-252
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 235... ...
A statistical disclosure occurs when the data dissemination allows data snoopers to gain information about subjects by which the snooper can isolate individual respondents and corresponding sensitive attribute values (Duncan and Lambert, 1989; Lambert, 19931. Policies and procedures are needed to reconcile the need for confidentiality and the demand for data (Dalenius, 19881.
|
From page 236... ...
This paper identifies key confidentiality and data access issues that IRB members must consider when reviewing protocols. It provides both a conceptual framework for such reviews and a discussion of a variety of administrative procedures and technical methods that can be used by researchers to simultaneously assure confidentiality protection and appropriate access to data.
|
From page 237... ...
Population data pose more disclosure risk than data from a survey having a small sampling fraction. Finally, special concern must be shown when other databases are available to the data snooper and these databases are both identified and share with the subject data both individual respondents and certain attribute variables.
|
From page 238... ...
Risk of Disclosure Measures of disclosure risk are required (Elliot, 20011. In the context of identity disclosure, disclosure risk can arise because a data snooper may be able to use the disseminated data product to reidentify some deidentified records.
|
From page 239... ...
Furthermore, an agency can model the decision making of the data snooper as a basis for using disclosure limitation to deter inferences about a target. Data snoopers are deterred from publicly making inferences about a target when their uncertainty is sufficiently high.
|
From page 240... ...
Marketing and credit information databases and voter registration lists are exemplars. Having this external information, the data snooper can employ sophisticated, but readily available, record linkage techniques.
|
From page 241... ...
The site gives a good description of the elaborate procedures followed to ensure confidentiality through statistical disclosure limitation (see also American Association for the Advance of Science, 19991. Genetic Research The American Society of Human Genetics published the following statement on this issue: Studies that maintain identified or identifiable specimens must maintain subjects' confidentiality.
|
From page 242... ...
, the R-U confidentiality map provides a quantified link between R and U directly through the parameters of a disclosure limitation procedure. With an explicit representation of how the parameters of the disclosure limitation procedure affect R and U
|
From page 243... ...
Restricted Data Procedures: Disclosure Limitation Methods Restricted data procedures are methods for disclosure limitation that require a disseminated data product to be some transformation of the original data. A variety of disclosure limitation methods have been proposed by researchers on confidentiality protection.
|
From page 244... ...
. Methods for Tabular Data A variety of disclosure limitation methods for tabular data are identified or developed and then analyzed by Duncan et al.
|
From page 245... ...
Disclosure-Limitation Methods for Microdata Examples of recoding as applied to microdata include data swapping; adding noise; and global recoding and local suppression. In data swapping (Dalenius and Reiss, 1982; Reiss, 1980; Spruill, 1983)
|
From page 246... ...
Rubin (1993) cogently argues that the release of synthetic data has advantages over other data dissemination strategies, because masked data can require special software for its proper analysis for each combination of analysis, masking method, and database type (Fuller, 19931; release of aggregates, e.g., summary statistics or tables, is inadequate due of the difficulty in contemplating at the data release stage what analysts might like to do with the data; and · mechanisms for the release of microdata under restricted access conditions, e.g., user-specific administrative controls, can never fully satisfy the demands for publicly available microdata.
|
From page 247... ...
CONCLUSIONS IRBs must examine protocols for human subjects research carefully to ensure that both confidentiality protection is afforded and that appropriate data access is afforded. Promising procedures are available based on restricted access, through means such as licensing and secure research sites, and restricted data, through statistical disclosure limitation.
|
From page 248... ...
Roehrig 2001 Disclosure limitation methods and information loss for tabular data.
|
From page 249... ...
1993b Statistical disclosure limitation practices of United States statistical agencies. Journal of Official Statistics 9:427-454.
|
From page 250... ...
Pp. 279-296 in Confidentiality, Disclosure, and Data Access: Theory and Practical Applications for Statistical Agencies, P
|
From page 251... ...
Pp. 43-74 in Confidentiality, Disclosure, and Data Access: Theory and Practical Applications for Statistical Agencies, P
|
From page 252... ...
Bell, James, John Whiton, and Sharon Connelly, 1998, "Evaluation of NIH Implementation of Section 491 of the Public Health Service Act, Mandating a Program of Protection for Research Subjects" This is the most recent major stucly of IRBs. The study universe was defined as 491 IRBs that in 1995 operates!
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.