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Assessing repositories

Questions to consider in evaluating repositories and their procedures:

• Will patient care be affected?
• What are the mechanisms for protecting donor privacy?
• What are the mechanisms for de-identifying donor tissue/info?
• How does the repository evaluate end-users?
• What review mechanism does the repository use for evaluating protocols?
• Does the repository want to collect linked tissue, unlinked tissue, anonymous tissue?
• What is the set of clinical information the repository wants to collect?
• Does the repository use collection quotas?
• Who are the members of the ethics/policy board at the repository?
• What are the plans for ending the collaboration?
• Does the repository conduct independent audits of consent documents?
• What financial incentives are offered? Do they pose any conflicts of interest?

Good reasons to collaborate

• community is strongly in favor of research and want a chance to participate
• advancing research particularly genomic research
• access to tissue inventory
• confidence in repository and its practices and procedures
• indirect benefits are shielded from patient care and financial conflicts of interest

Good reasons to refuse to collaborate

• You believe that it is exploitive of patients (perhaps because you believe profits to the medical center will go directly into the operating budget of the institution.
• You believe it compromises the integrity of your institution (perhaps because key administrator(s) at the medical center have ties to upper management in the repository company.
• You believe that collections protocols will not adequately protect the privacy of tissue donors, their identities, clinical information, etc.
• You believe a quota system for collecting will compromise patient care
• You believe that your community is opposed to research
• Considerations for international repositories/international collaborations or contributing to a bank that is international w/ venders or collections
• You believe the repository under consideration will not be an ethically responsible partner

Should medical centers collaborate with more than one repository company? In our research, we have found medical centers that do in fact hold collaborative agreements with more than one repository company. This needs to be disclosed to donors.