Research Power and Confidentiality Issues Associated with Combining Data Sets

Geraldine P. Mineau, University of Utah
Jean E. Wylie, University of Utah

Considerable benefits are associated with electronically linked datasets for demographic, biomedical and health researchers. Although such databases have substantial benefits, the public’s concern about misuse and the need for appropriate safeguards have sparked national discussions. This paper addresses some of the issues that are associated with combining or linking data sets for demographic research and how they can be addressed. It focuses on the challenges and solutions regarding the relationship with the data contributor. The development of research resources or centers to take the role of linking data sets for research use is explored. The Utah Population Database (UPDB) is used as an example of one possible way to approach these issues. It has existed for over 30 years and has a long history of developing policies and procedures that address such issues. It provides access to about 9 million records and supports 65 projects.

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Presented in Session 97: Confidentiality, Privacy, and Ethical Issues in Demographic Data