in at least some applications—but it indicates that the operators of such a repository must be circumspect in their expectations and representations. Advances in technology will undoubtedly change the criteria for determining whether particular specimens are fit for purpose in ways that may make fewer or more of them useful.
The committee recommends that the JPC, as part of its plan for improving the use of repository materials in research, evaluate the strengths and limitations of the collection to the extent permitted by its resources and current science and technology, consider how to enhance the repository’s value given the JPC’s organizational and budgetary constraints, and formulate its retention policy and dissemination management and marketing strategies accordingly. In this regard, the committee believes that it is crucial for the JPC to find ways to engage the relevant professional community in discussion concerning future use of the repository so that it can understand better the potential demand for collection materials and how to facilitate their use.
The committee believes that the JPC will increase its appeal to researchers as an important source of biological materials if the repository undertakes a more thorough documentation of its holdings and makes this information more easily accessible to medical professionals and scientists so they can better determine whether the JPC has specimens that meet their needs. Harvard’s Pathology Specimen Locator (PSL) Core, for example, provides a searchable database of pathology samples left over from diagnostic procedures performed in five university-associated facilities (NCI, 2009). These samples are made available for research study with their accompanying clinical data. The PSL Core uses a number of privacy safeguards for its database: it may be accessed only via a password provided to qualified investigators, data transmissions are encrypted, all data are deidentified and coded with link-backs to repository specimens and data held on a separate fire-wall-protected system, users are limited in how much information they can access on specific specimen sources, and data access is further limited if a query returns only a small number of source individuals who meet the search criteria (Drake et al., 2007).
The JPC may wish to consider whether the utility of a subset of biorepository samples could be enhanced via limited, focused audits of existing materials (both specimens and data) in response to requests for access to those materials. For example, following a request for samples of a particular disease, repository staff or an honest broker might abstract annotations from the database for archived cases or perform a specific screen on archived samples as an add-on service to assess the accuracy of the recorded diagnosis, viability of the tumor, or quality of the specimen.1 Thus, the
1Such information would be appended to existing records to enhance their future value.