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De-identifying samples

Typically samples are de-identified by removing all pieces of information that identify the person from whom the tissue was removed (such as name, birth date, social security number, driver's license number, phone number, address, insurance numbers, patient ID# and any other medical record number). Some repositories even slightly modify the date of birth, though this is not typical.

Samples for which this identifying information was never collected are considered truly anonymous. Those for which a code number links the sample to medical record data are de-identified for the purposes of the recipient, who does not have the link, but are traceable, by repository staff, to associated medical information.

Some repositories maintain the coded link only temporarily, in order to collect medical data up to the point in time of surgery, or shortly thereafter. Then the link is destroyed so that no further medical data can be collected. At this point the sample is anonymized. Other repositories allow the option of future clinical data collection by maintaining the coded link indefinitely (but confidentially).

The specific de-identification method, type of data collection, length of time data will be collected, and length of time coded link is maintained should be clear in the collaboration contract and in the informed consent document.