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FAQ about brain donation

Did the donors sign an informed consent for brain donation?

Yes, all donors signed an informed consent, stating that they give permission to perform a brain autopsy, removal of the brain and tissue dissemination for scientific research. Moreover, they also approved access to their medical files. The informed consent is co-signed by the next of kin, who needs to make sure that the NBB is notified in case of death of a donor.

In case of permanent mental incompetence, authorization was given by the legal representative.

Is the brain tissue supplied accompanied by relevant medical information?

Yes, the tissue is accompanied by an extensive summary of all available medical information. Moreover, the NBB-Psy donors have to fill in a web-based medical questionnaire every year (control donors every five years). The medical questionnaire not only inventories the medication used, but also whether psychiatric, neurological or physical conditions are present in the donor and his or her family.

Does authorization by the legal representative need to be given after the death of a registered donor?

No, according to Dutch law the donor’s informed consent is sufficient to perform the brain autopsy. This legislation allows us to act quickly after death. Combined with the fact that the Netherlands is a small country and the 24/7 availability of staff, this ensures short post-mortem intervals (average of 6.5 hours).

Are donors aware that the tissue may also be supplied to pharmaceutical companies?

Yes, the informed consent information brochure explicitly states that also pharmaceutical companies can apply for brain tissue.