WP02 - Ethics / Legal Issues
The main objectives of WP 2 are:
  • contributing to the development of gold standards in Brain Banking;
  • identifying legal requirements for collecting, processing and distributing human tissue for scientific research;
  • identifying ethical principles by which a Brain Bank should abide;
  • promoting these principles within the BNE consortium and outside;
  • promoting regulated access of the research community to the material obtained by Brain Banks;
  • harmonizing differences in the practices of the BNE partners, when harmonization is deemed necessary;
  • encouraging discussions and resolutions by the Consortium members;
  • supporting the dissemination of knowledge and the sharing of practical experience.

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 given rise to many controversies in the media and 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.

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. In order to set up and maintain uniform ethics standards within the BNE Consortium, the NBB has been busy with drafting a series of documents which will serve to provide a general framework (Consortium level) and could function as a guideline on the level of the individual organization (Brain Bank level). Globally accepted bioethical principles and international doctrine as well as best practices of the Consortium members underlie the activities of WP 2.

Code of Conduct

BNE Code of Conduct

Other activities

Besides development of the above-mentioned documents the NBB aims to encourage and facilitate discussions on the topics of ethics among the BNE consortium members. Points agreed upon by the Consortium partners are aimed to be included in the Draft Code of Conduct.  
Whenever harmonization of certain practices among the BNE members is deemed desirable, the NBB aims to facilitate the decisions of the Consortium.  Harmonization of practices is often necessary in order to facilitate collaborations and international exchange of tissue samples, to meet certain legal requirements and ethical standards or to anticipate on the developments in the field of ethics and biotechnology.

Workpackage Leader

Dr. Inge Huitinga

Phone: +31 (20) 566 5499 
Fax: +31 (20) 691 8466 
Dr. Inge Huitinga

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Workpackage Structure