Scientific Research: the Italian Data Protection Commissioner Soro to support a very dangerous position about Biobanks

In an interview published by the Italian newspaper “La Stampa” on Oct. 31, 2017 the Italian Data Protection Commissioner Soro stated that:

“If it is true that a profit can be gained from the research on human biological material, is it true – too – that there is no such thing as biobank ownership, but only the right to research the available samples. 1

Actually, this is not true because human tissues, once taken, become “res nullius” and  – therefore – can be owned by a research facilities.

There are no case law in Italy but, as Jennifer Wagner remarks in his article Property Rights and the Human Body, the principle that a tissue taken from a patient doesn’t belong to him anymore has been expressed since longtime (1990) in Moore v. Regents of the University of California, sustained in 2007 by Washigton University v. Catalona , and recently (2014) affirmed by a Canadian court.

The statement from the Italian Data Protection Commissioner, other than being just wrong, counterdicts the declaration of principle of the GDPR’s Whereas n. 4:

“The processing of personal data should be designed to serve mankind. The right to the protection of personal data is not an absolute right; it must be considered in relation to its function in society and be balanced against other fundamental rights, in accordance with the principle of proportionality.”

By interpreting the data protection regulations in a way to limit both scientific research and clinical trials – already regulated by international conventions, EU regulations, national Health Ministry Decrees and European guidelines – one is creating unnecessary burdens to activities whose only aim is to save people’s life o let them free to die with dignity.

  1. “Se è vero che si possono ottenere profìtti dalle ricerche sul materiale biologico degli esseri umani, è altrettanto vero non esiste la proprietà di una biobanca, ma solo il diritto a fare studi sui campioni disponibili” – English translation by Andrea Monti.

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