from a research perspective,22 but raises issues of consent and privacy that are discussed elsewhere in this report. Nonetheless, the committee believes that there may be merit in digitizing all new cases coming to the repository and suggests that the JPC consider whether it is feasible given economic and logistical circumstances.

Finally, the committee believes that the JPC would derive value from pursuing research partnerships with the Department of Veterans Affairs (VA). Specimens held by the repository and data on long-term health outcomes possessed by VA can be productively combined to examine questions regarding the health consequences of military service and the determinants of disease and wellness. The JPC may wish to consider using the unique resources of the DoD to advance the state of the art in pathology through, for example, partnering with the DoD’s cutting-edge research entities to explore how technologies developed for other purposes might be used in pathology applications. It should also consider partnering with DoD medical or information-technology investigators to examine how JPC materials and data may be combined with other DoD or federal databases to facilitate medical research.

Use of Rare and Unique Materials

What considerations should be given to utilization for research of unique, one-of-a-kind, material within the central collection of the Tissue Repository?

Rare and unique materials in the Central Collection of the repository are a resource for the JPC, the country, and the global scientific community. As the experience with genetic analysis of the 1918 influenza virus illustrates, such materials may play a vital role in today’s health research. The question of what constitutes rare and unique material is complex, however, and depends on several factors: even relatively common diseases have rare subtypes, for example. Moreover, particular collections of specimens may be “unique” in the aggregate, although until a particular set of desired material characteristics is defined it may not be possible to determine whether or not other similar collections are available elsewhere or whether the number of representative samples in the collection is small or unusual enough to merit special handling. It is also difficult to predict what may prove to be valuable at some future time or under particular circumstances.

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22Moreover, in circumstances in which research using personally identifiable information is permissible, data-matching techniques may allow content from diverse military and civilian databases to be merged and married to specimens, thus expanding the array of studies that can performed on them and enhancing their value.



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