Property, personality rights and data protection with regard to biobanks–a layered system

- J Int Bioethique
Author/s: -Simon, J. -Robienski, J.
Journal: J Int Bioethique
Year: 2009
Volume: 20
Issue: 3
Pages: 47-56
Abstract:

The person from whom body materials were collected, first becomes their owner in analogy to section 953 German Civil Code. This applies also if the body materials were taken within the framework of a treatment contract and remain there after the treatment/diagnosis have ended. Only if an explicit consent of the patient was given to the effect that the body materials are to be owned by the clinic/doctor, only then is it possible to transfer ownership. A conclusive transfer of ownership does not occur. A complete anonymisation makes the body materials ownerless since an assignment to a person is not possible any longer. In this case, the former carrier of the body materials has no further chance to make claim to any rights. In that case, science and biotechnological industry are free to utilize the body materials. The former carrier of the body materials may make claims to benefit sharing only if instead of an anonymisation only a pseudonymisation takes place. However, it is common practice that the payment for damages according to existing rights to benefit sharing after unlawful use is quite small. Only a trustee model could achieve that property rights be observed, that personal or personality rights are protected in the best possible manner and that proper benefit sharing be done.

URL: http://www.ncbi.nlm.nih.gov/pubmed/20425939