obligate the researchers to keep information secure, to avoid efforts to identify data or specimen sources, and to otherwise protect the interests of specimen sources and the DoD.
• Solicitation of input from the community of people—in particular, active-duty military, veterans, and their family members—whose specimens are held by the repository through, for example, representation on the DAC or creation of a community advisory board. DACs are in use by other repositories to address such issues, which lie beyond considerations related to the scientific merit of a proposed research initiative (Broad Institute, undated; NCBI, undated; NCI, 2012a).
• Notification through public means—for example, posting on its website, in newsletters, and in other media that reach the military community and the general public—of the JPC’s intention to allow repository materials to be used for research purposes, including — examples of the kinds of research that have been done with repository specimens in the past.
— a description of the oversight and review mechanisms governing access to the materials that can be easily understood by the general public.
— a clear statement that no access will be allowed without the review and approval of an IRB.
— user-friendly means by which people may ask questions or request that a good-faith effort be made to determine whether the repository holds specimens from them, with the option to request that any specimens be withheld from research use (through, for example, a Web form, e-mail address, or telephone number for inquiries).16 The committee notes that given the state of the records and the manner in which subject information is coded, it may not be feasible to make such a determination in all cases; this limitation should be made clear to persons who make inquiries, and they should be assured that personally identifiable information will be protected in all circumstances.
• Posting, in a forum such as the JPC website, of the active research projects that are using repository materials. This will promote accountability to specimen sources and citizens regarding how repository materials are being used; it will also help to inform the
16Procedures for withdrawing data and materials from research use are in place in other repositories of military biospecimens, including the collection maintained as part of the Department of Veterans Affairs Million Veteran Program (http://www.research.va.gov/resdev/mvp/veterans.cfm).