Code of Conduct
1. Introduction and the purpose of the Code of Conduct
The partners of the BNE consortium belong to a variety of academic institutions, established in eleven different European countries, making considerable variations in practice, policies and legal requirements inevitable. The lack of harmonization in European legislation with regard to post-mortem procedures, donation of tissue and organs to tissue banks for research purposes contributes to the complexity of the issue. Even though uniform operating guidelines are impossible to formulate, we underline the idea that a certain set of minimum ethical standards, should be maintained at all times regardless of the differences among BNE partners. The Code of Conduct, which is a product of joint efforts of the workpackage 2 participants, contains these standards. The Code of Conduct addresses various fundamental topics such as informed consent, the rights of the person donating tissue, respect for and observance of confidentiality and protection of personal data, management of collections of human biological materials and the transparency and accountability within the organization of a brain bank.

2. Fundaments of the Code of Conduct
The Code of Conduct is based on various authoritative sources available in the discipline of law and ethics. Such sources include Declarations, Conventions, Recommendations, Guidelines and Directives issued by the international governmental and non-governmental organizations, such as the Council of Europe, European Commission, World Medical Association and World Health Organization.

Click here for an overview of the international legislation and guidelines on bioethics used in preparation of the Code of Conduct.

3. The Status
The Code of Conduct has been formally ratified by all members at the 5th NGB meeting in Barcelona, June 6th, 2008.

4. The Structure
The Code of Conduct consists of IV Chapters:

The first Chapter contains definitions (indicated throughout the text by Capital Letters), objectives, general principles and the scope of the Code of Conduct.

The second Chapter deals with different aspects of Material procurement (e.g. Informed Consent, Authorization, Incompetent persons, Autopsy).

The third Chapter states the principles which should govern the processing of the Material (e.g. financial aspects, confidentiality, data protection measures).

The forth Chapter is concerned with distribution and the use of the Material for research. It also contains articles on research results and guidelines on how to deal with Information on Hereditary Diseases.

 

Example: The Ethical Declaration of the Netherlands Brain Bank (NBB)
The Ethical Declaration of the NBB summarizes the ethical principles abided by the NBB and describes the legal embedding of the procedures used. Researchers can cite or use this document when they submit project proposals for review by ethics committees, research councils or in proposals for projects financed by the European Commission. The declaration contains information on Informed Consent, autopsy-, privacy- and safety procedures and information on the material transfer process.

 Ethical Declaration of the NBB (131 KB)

 



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