Updated: Feb 15
Author: Patricia Garcia Jareño
Have you ever thought about donating your brain to science? Do you know where it goes after donation?
Your donated brain will go to a biobank, a place where biological material is collected and stored. Biobanks could be classified as population-based or disease-oriented biobanks; for example, a population-based biobank stores blood samples from a specific population to study the incidence of a disease, COVID-19 could be a good actual example. The second group are the disease-oriented biobanks, where donated tissue is stored from different individuals with the same disease to find new biomarkers of diagnosis or possible future drug targets.
Going back to our brain donation, an example of disease-oriented biobanks are those storing brain tissue from people suffering from the neurodegenerative condition called dementia, which englobes Alzheimer’s, Frontotemporal Dementia, Dementia with Lewy bodies or Parkinson’s disease, among others. The accuracy of a possible diagnosis of dementia is between 70-80%, and sometimes can only be elucidated after a postmortem study. So, the postmortem is not only important for clinicians, pathologists, or researchers to understand better the cause of the disease, the pathogenesis and to develop possible treatments or improvement the diagnosis; it is also important for the family, to assess the potential risk of developing the disease, as some of those dementias are inherited.
As you can imagine, human biobank activities are ethically complex and are governed by strict regulations. Legislation and governance differ between countries and most of the biobanks belong to public health systems, however, there are also private and public-private biobanks. It will be helpful to have a global governance framework, especially for mid- and low-income countries, where the ethics has not been as widely discussed as in high-income countries, to face ethical problems such as confidentiality, exploitation or distribution, in order to have a better control of biobanks, reduce inequalities between countries and make the information and samples more accessible worldwide.
As if this were not complicated enough, what happens when the biobank does not collect tissue, blood or cells, but human fetal tissue? The complexity increases and the problem may even take a political view, as this tissue comes from abortions, an extremely controversial topic. In 2015 an undercover video from a physician of an American organization that provides reproductive health care describing some of her work with abortions and fetal tissue went viral taking the controversy to the US-Senate and in June 2019 the Trump Administration limited the funding to projects using this type of tissue in the US.
Fetal tissue is not only significant to understand human development but is also used for development of vaccines and regenerative medicine treatments such as cell replacement therapy for Parkinson’s (PD) or Huntington’s (HD) disease. For PD and HD, regions of developing brain, namely ventral mesencephalon (VM) for PD and whole ganglionic eminence (WGE) for HD, have already been used in clinical trials with some promising results. However, the whole field is involved in a transition process for trying to move forward this regenerative technology with the use of human pluripotent stem cells in order to stop the use of fetal tissue.
In summary, biobanks have become a powerful tool for science, helping to understand better the pathology and etiology of multiple diseases, improving future diagnosis or even developing new therapies. In some specific cases, biobanks are extremely controversial and for that reason, regulations and legislations are important and clinicians, pathologists and researchers should be aware of them and raise up any ethical concerns that they could have.
So, would you donate your brain to science?
Asslaber M, Zatloukal K., Biobanks: transnational, European and global networks, Briefings in Functional Genomics and Proteomics. 2007, Vol. 6, No. 3, p. 193-201.
Gottweis H, Kaye J, Bignami F, et al. . Biobanks for Europe; A Challenge for Governance. Luxembourg: European Commission; 2012. DOI:10.2777/68942
Love S. Neuropathological investigation of dementia: a guide for neurologists. Journal of Neurology, Neurosurgery & Psychiatry 2005;76:v8-v14.
Hofman, P., Bréchot, C., Zatloukal, K. et al. Public–private relationships in biobanking: a still underestimated key component of open innovation. Virchows Arch 464, 3–9 (2014).
Chen H, Pang T. A call for global governance of biobanks. Bull World Health Organ. 2015;93(2):113-117. doi:10.2471/BLT.14.138420
Wadman, M. The News Feature ‘The truth about fetal tissue research’ (Nature 528, 178–181; 2015).
Barker, R.A., Drouin-Ouellet, J., and Parmar, M. (2015). Cell-based therapies for Parkinson disease—past insights and future potential. Nat. Rev. Neurol. 11, 492–503.