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| European Multiple Myeloma Biobank |
The Myeloma Stem Cell Network (MSCNET) is a network within the EMN, which is supported by EU's Sixth Framework Programme. One of the main focus areas in MSCNET was to create a common Biobank with a collection of samples from myeloma patient from the MSCNET member countries. Therefore members of the network have looked into their national legislation regarding Biobanking (Spain, Belgium, The Netherlands, UK, France, Germany and Denmark). Most countries had formulated Biobanking guidelines or legislation, Austria and Belgium are notable exceptions, where so far such legislation is lacking.
It seems that there is a broad consensus in the EU that informed consent should be obtained from patients if biologic material is to be used for scientific purposes, and across the member countries the patient has the right to request termination of storage and destruction of his/her biologic samples. However, there is a noteworthy difference in the extent of information, which has to be provided for the patient. Some countries require a “specific consent”, where the exact nature of the research has to be described in details in the informed consent form. In other countries a more “general consent” is sufficient stating that the sample will be used for scientific purposes.
With regards to exchanging samples across borders this is legally possible between the MSCNET members. In general this would require the approval from the patient as well as the local ethics committee. However there are some practical problems with sending samples to a common “physical” biobank. Therefore as an alternative, the MSCNET partners have decided to create a virtual biobank, where an inventory of available samples will be present and where samples are exchanged directly between partners.
It would be of great importance to look further into these national differences and work toward a consensus in this area between EU member countries.
Hans E. Johnsen MD DMSc
Professor
MSCNET project coordinator
Department of Haematology
Aalborg Hospital, Aarhus University
Aalborg
Denmark
Niklas Zojer
Medical doctor
Wilhelminen-Krebsforschungsinstitut
1st Department of Medicine
Center for Oncology and Hematology
Wilhelminenspital
Vienna
Austria
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| 11 Nov 2008 by kirsten |
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