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Data Protetcion, MTA, Human Samples and Identity Backtracing

To comply with privacy and data-protection regulations, Material Transfer Agreements for human samples often state that the samples are either anonymous (meaning: the donor institution doesn’t know at all the ID of the patient) or anonymized (the donor institution only knows and keeps secret the patient ID.) But this compliance approach won’t work anymore, since the probability of backtracing the ID of patient accessing third parties provided information is not only a proof-of-concept but an “actual reality.”

Amending the MTA to handle this issue is far more complicated than ask the lawyers to just re-phrase their lingo, because what is actually needed is a thorough analysis of the human sample collection process back to the first ring of the donor chain.

The sooner the biobank community will address this issue, the better for the research, the pharma industry and – first of all – the patient himself.