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Sharing De-identified Data

Sharing De-identified Data: Use the collected information to implement new strategies for worker safety and health at DOE sites and to inform industry-specific researchers while still protecting sensitive participant information and confidentiality.

The confidentiality and privacy rights of former workers are not only a legal requirement, they are crucial to establishing and maintaining credibility with the former worker community. All medical information that is collected as part of this program is treated as confidential and is used only as allowed by the Privacy Act of 1974. All FWP activities are conducted with the approval of the Institutional Review Boards, or Human Subjects Committees, of DOE and involved universities. All individuals sign an informed consent and Health Insurance Portability and Accountability Act (HIPAA) authorization prior to participation.

De-identified (i.e., with personal identifiers removed), combined medical results from FWP activities are shared with the DOE Field Office Managers, Laboratory Directors, Contractor Plant Managers, and Site Occupational Medical Directors (SOMDs) during site visits and reported on at various meetings, such as the EFCOG Occupational Medicine Subgroup meetings and the Beryllium Health and Safety Committee meetings, as well as through the annual report. The collection and analysis of this information can assist with identifying disease trends at a particular site, within a specific population (job class) of workers, or for a specific exposure/hazard. In addition, DOE has applied operational "lessons learned" to its current workforce based on exposures identified through the FWP.

The gathered data are also valuable for other researchers to review. In order to share this information with researchers while still protecting the workers' right to privacy and confidentiality, the data will be provided in de-identified form to the DOE Comprehensive Epidemiologic Data Resource (CEDR). CEDR is a public-use data repository that was established to improve public access, as well as access by researchers, to data from health studies and other activities funded or conducted by the Department.