Guidelines for Brain Banking

The legal and ethical issues in brain banking are numerous. Post-mortem removal and retention of organs as well as research with human tissue and genetic information have posed various dilemmas in the fields of law and ethics. Due to the relative novelty of these issues, the law is often lacking in clear instructions and unambiguous guidelines. Many governmental and  professional organizations (such as OECD, CoE, WMA), which draft guidelines in the field of human research ethics, do not fully account in their discourse for the ethical problems involved in post-mortem cell and tissue banking for research purposes. Because the Brain Banks in many legislations do not qualify for a certain well-defined legal regime and because the existing regimes differ significantly throughout Europe many uncertainties arise for the decision-makers, persons who initiate and manage Brain Banks.

Appointed to lead the work in the workpackage on legal and ethical issues, the NBB has been systematically surveying and reviewing legal and ethical issues involved in Brain Banking. On these pages a series of documents are presented which can serve as a guideline, a checklist and in many cases as a template, for those who aspire to set-up or professionalize a research biobank which collects, processes and distributes organs, tissues, cells or fluids obtained from the deceased donors. Globally accepted bioethical principles and international doctrine as well as best practices of the Consortium members underlie all work presented here.

The template documents are licensed under Creative Commons Attribution Netherlands license. The documents can be copied, distributed and adopted for own purposes, while doing so BrainNet Europe should be mentioned as the source of the templates, with exception of the cases where such attribution is not customary or is inappropriate.

These documents are made available to the public by BrainNet Europe for use as an example of a template only. Although documents presented on this website have been assembled with due care and attention, individual implementation in accordance with local legal requirement remains the own responsibility of the user. It is impossible to account for each and every difference in the particular legal requirement of any local biobank. If in doubt or whenever indicated so in the document the user should consult local legal advice or an appropriate authority. Neither BrainNet Europe nor any affiliated organization thereof, assumes any legal liability or responsibility for the accuracy, completeness or usefulness of any information disclosed in these template documents.



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