In March 1996 the discovery of a new form of Creutzfeldt-Jakob disease (CJD) was announced to a shocked world. In order to understand why this news took the headlines by storm, it is necessary to trace the history of this rare disease and in particular its links with bovine spongiform encephalopathy (BSE), or "mad cow disease". By 1996, Britain had been in the throes of the BSE epidemic for ten years and it was believed that cows had contracted the disease by consumption of scrapie contaminated food-stuff, scrapie being a similar but much older disease in sheep. Because this represented a species jump from sheep to cows, it was predicted in many quarters that BSE posed a new threat to human health. Therefore the Government took steps to remove BSE contaminated products from the human food chain and the Department of Health set up a surveillance programme to monitor the incidence of CJD in UK.
Research utilizing human tissue and its removal at post-mortem has given rise to many controversies in the media and posed many dilemmas in the fields of law and ethics. The law often lacks clear instructions and unambiguous guidelines. The absence of a harmonized international legislation with regard to post-mortem medical procedures and donation of tissue and organs contributes to the complexity of the issue. Therefore, within the BrainNet Europe (BNE) consortium, a consortium of 19 European brain banks, we drafted an ethical Code of Conduct for brain banking that covers basic legal rules and bioethical principles involved in brain banking. Sources include laws, regulations and guidelines (Declarations, Conventions, Recommendations, Guidelines and Directives) issued by international key organizations, such as the Council of Europe, European Commission, World Medical Association and World Health Organization. The Code of Conduct addresses fundamental topics as the rights of the persons donating their tissue, the obligations of the brain bank with regard to respect and observance of such rights, informed consent, confidentiality, protection of personal data, collections of human biological material and their management, and transparency and accountability within the organization of a brain bank. The Code of Conduct for brain banking is being adopted by the BNE network prior to being enshrined in official legislation for brain banking in Europe and beyond.
In: Klioueva , N M , Rademaker , M C , Dexter , D T , Al-Sarraj , S , Seilhean , D , Streichenberger , N , Schmitz , P , Bell , J E , Ironside , J W , Arzberger , T & Huitinga , I 2015 , ' BrainNet Europe's Code of Conduct for brain banking ' , Journal of Neural Transmission , vol. 122 , no. 7 , pp. 937-40 . https://doi.org/10.1007/s00702-014-1353-5
Research utilizing human tissue and its removal at post-mortem has given rise to many controversies in the media and posed many dilemmas in the fields of law and ethics. The law often lacks clear instructions and unambiguous guidelines. The absence of a harmonized international legislation with regard to post-mortem medical procedures and donation of tissue and organs contributes to the complexity of the issue. Therefore, within the BrainNet Europe (BNE) consortium, a consortium of 19 European brain banks, we drafted an ethical Code of Conduct for brain banking that covers basic legal rules and bioethical principles involved in brain banking. Sources include laws, regulations and guidelines (Declarations, Conventions, Recommendations, Guidelines and Directives) issued by international key organizations, such as the Council of Europe, European Commission, World Medical Association and World Health Organization. The Code of Conduct addresses fundamental topics as the rights of the persons donating their tissue, the obligations of the brain bank with regard to respect and observance of such rights, informed consent, confidentiality, protection of personal data, collections of human biological material and their management, and transparency and accountability within the organization of a brain bank. The Code of Conduct for brain banking is being adopted by the BNE network prior to being enshrined in official legislation for brain banking in Europe and beyond.