Neuroscience Bulletin

, Volume 35, Issue 2, pp 267–269 | Cite as

Legal and Ethical Issues in Brain Banking

  • Inge HuitingaEmail author
  • Mignon de Goeij
  • Natasja Klioueva

The legal and ethical issues in brain banking are numerous. The 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. The ethical problems specifically involving post-mortem cell and tissue banking for research purposes are not always specifically taken into account. This means that a brain bank frequently does not qualify for a certain well-defined legal regime. Because of this and the fact that the existing regimes differ significantly throughout the world, many uncertainties arise for the initiation and management of brain banks. Guidelines on informed consent, confidentiality, financial sustainability, accountability, and transparency are conditions sine qua non for the good conduct of a professional brain bank and are briefly highlighted.



  1. 1.
    Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997.Google Scholar
  2. 2.
    Bauer K, Taub S, Parsi K. Ethical issues in tissue banking for research: a brief review of existing organizational policies. Teor Med 2004, 25: 113–142.Google Scholar
  3. 3.
    Samarasekera N, Al-Shahi Salman R, Huitinga I, Klioueva N, McLean CA, Kretzschmar H, et al. Brain banking for neurological disorders. Lancet Neurol 2013, 11: 1096–1105.CrossRefGoogle Scholar
  4. 4.
    Klioueva NM, Rademaker MC, Huitinga I. Design of a European code of conduct for brain banking. Handb Clin Neurol 2018, 150: 51–81.CrossRefGoogle Scholar
  5. 5.
    Klioueva NM, Rademaker MC, Dexter DT, Al-Sarraj S, Seilhean D, Streichenberger N, et al. BrainNet Europe’s Code of Conduct for brain banking. J Neural Transm 2015, 122: 937–940.CrossRefGoogle Scholar
  6. 6.
    Klioueva N, Bovenberg J, Huitinga I. Banking brain tissue for research. Handb Clin Neurol 2017, 145: 9–12.CrossRefGoogle Scholar
  7. 7.
    Abbot A. Brain child. Nature 2011, 478: 442–443.CrossRefGoogle Scholar
  8. 8.
    Boyes M, Ward P. Brain donation for schizophrenia research: gift, consent and meaning. J Med Ethics 2003, 29: 165–168.CrossRefGoogle Scholar
  9. 9.
    Directive 98/44/EC of the European Parliament and of the Council of 6 July 1998 on the legal protection of biotechnological inventions. Forum (Genova) 1999, 9: 15–24.Google Scholar
  10. 10.
    Rademaker SHM, Huitinga I. A new viewpoint: running a non-profit brain bank as a business. Handb Clin Neurol 2018, 150: 93–101.CrossRefGoogle Scholar
  11. 11.
    Alta Charo R. Body of research—ownership and use of human tissue. New Eng J Med 2006, 355: 1517–1519.CrossRefGoogle Scholar
  12. 12.
    Andrews L, Nelkin D. Whose body is it anyway? Disputes over body tissue in a biotechnology age. Lancet 1998, 351: 53–56.CrossRefGoogle Scholar
  13. 13.
    Kretzschmar H. Brain banking; opportunities, challenges and meaning for the future. Nat Neurosci 2009, 10: 70–77.CrossRefGoogle Scholar
  14. 14.
    Bell JE, Alafuzoff I, Al-Sarraj S, Arzberger T, Bogdanovic N, Budka H, et al. Management of a twenty-first century brain bank: experience in the BrainNet Europe consortium. Acta Neuropathol 2008, 115: 497–507.CrossRefGoogle Scholar

Copyright information

© Shanghai Institutes for Biological Sciences, CAS and Springer Nature Singapore Pte Ltd. 2018

Authors and Affiliations

  1. 1.Netherlands Brain Bank, Netherlands Institute for Neuroscience, Netherlands Royal Academy of Arts and SciencesAmsterdamNetherlands

Personalised recommendations