BOX 3-2Data Sharing for the Health and Retirement Study

The Health and Retirement Study (HRS) at the University of Michigan uses a combination of approaches to share data while protecting confidentiality (Nolte and Keller, 2004). Investigators who wish to use sensitive or potentially identifiable data from the HRS can apply for a license for full access to the data if they agree to certain conditions, such as developing and implementing a data protection plan to protect participant confidentiality; allowing yearly inspections; providing annual reports; and in some cases, submitting to a prepublication review of the analysis results. The major disadvantages of this approach are the length of time required to obtain approval for a nonstandard data protection plan and the fact that only principal investigators of a federally funded project who are also affiliated with an institution with an NIH-certified human subjects review process can apply for a license. Thus, junior faculty members and students, for example, have difficulty accessing the data through such agreements (Nolte and Keller, 2004).

For this reason, the HRS also makes its data available through the Michigan Center on the Demography of Aging (MiCDA) Data Enclave in Ann Arbor. Investigators who do not meet the requirements for a data license can come to the data enclave to perform data analyses. There are few restrictions other than a review of the analyses by the data enclave staff to ensure that they include no information that could compromise the confidentiality of the participants whose data are in the database. The main disadvantage is that an investigator must go to the data enclave to perform an analysis (Nolte and Keller, 2004). To avoid this disadvantage, the HRS began a virtual data enclave program, through which researchers can access data on the HRS server remotely from their own institutions. To maintain confidentiality, all the data are kept in the HRS computers. Remote users send instructions to perform analyses that are carried out on the HRS computers and then receive the results. Various security systems ensure that no confidential data are released, and the data enclave staff still review the results of the analyses to ensure that no breaches of confidentiality occur. The main disadvantage of this approach is the cost of setting up secure computer systems at the investigators’ home institutions (Nolte and Keller, 2004).

The HRS approaches to data access illustrate two access models available for dealing with biospecimens and associated data.

From: 3, Protecting Privacy and Confidentiality: Sharing Digital Representations of Biological and Social Data

Cover of Conducting Biosocial Surveys
Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata.
National Research Council (US) Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys; Hauser RM, Weinstein M, Pool R, et al., editors.
Washington (DC): National Academies Press (US); 2010.
Copyright © 2010, National Academy of Sciences.

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