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Risk/benefit analysis

Risks to Tissue Donors
There are no medical risks to those who donate excised tissue to research. There may be minor risks of discomfort or complications if additional procedures, such as a blood sample, are requested. The major risk from tissue donation has to do with the appropriate use of the associated information in cases of linked and unlinked samples. Genetic and other medical information might be used as a basis for employment discrimination, refusals for (health, life, long-term care) insurance coverage, rejections from certain occupations, training programs. Individuals may suffer negative consequences from disclosures of genetic information in their families, among co-workers, etc. It is important to disclose the protections that will be taken to safeguard donors' identities. This should include a description of: how the tissue is de-identified, the chain of custody for coded samples, who has access to the codes, the kinds of clinical information that will be accessible to researchers, and certificates of confidentiality.

Benefits to Tissue Donors
There is no benefit for tissue donors. Some repositories assert that a second diagnostic review at the tissue to confirm diagnosis and appropriate labeling for banking is a minor benefit because it provides a second check of the diagnosis. There are no financial benefits for tissue donors to repositories.

There may be a benefit to society from successful medical research on repsitory tissue.

Key Point: There are no benefits for tissue donors to repositories.