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Ensuring Respect for the Donated Brains of Children

Source: Dierk Schaefer, Flickr

Nature has reported on the tissue-bank shortage involving donations of brains from children1. An accompanying editorial highlights that the key to treatments for autism and schizophrenia could lie in the brains of recently deceased children and that in order to make advances researchers require access to an international bank of donated material2.

I would like to applaud the editors for their courage to direct attention to this sensitive subject. However, I would like to point out that there is an equal if not greater need for human brain tissue from the living, which is also difficult to obtain. Only leftover tissue from approved surgical procedures can be used, and the fact that tissue is saved from disposal must not compromise the quality of its diagnostic evaluation nor have an influence on the planning of the operation3.

The largest obstacle to a sustainable4 tissue resource does not appear to be the difficulty in obtaining consent to retain and use brain tissue for research2 but the striking absence of an international legal framework to protect those who are entrusted with the handling of the tissues. These custodians (human tissue cannot be owned) are responsible for the collection, secure storage and diagnostic work-up before tissue is handed out to researchers4. Specific requirements for the handling of brain tissue need to be met4.

In order to avoid conflicts of interest, access to human tissue should not be controlled by enterprises whose purpose is to generate a profit4. If commercial entities are granted access by the relevant supervisory body, because and only if there is a clear benefit for the diseased, all interactions between the tissue bank and the company should be closely monitored and regularly audited by an international and truly independent committee4. Following the banking crisis, the real money is now in healthcare and drugs5 but human tissue and tissue banks must never be traded or sold3, and companies cannot serve as custodians of human tissue to avoid even the perception of a deal (someone cashing in on an altruistic gift). In this context, the observation that former drug company employees have joined charitable organizations that promote tissue donations or have been appointed to run hospitals is disquieting.

Human tissue banking is primarily a matter of public trust. This trust is based on an assumption of effective governance, which requires institutional policies and practices that encourage reporting of malpractice. Examples of human tissue abuse exist6 illustrating how responses to fraud are driven by scandals7. But it cannot be prudent to risk a scandal in an area as sensitive as human tissue banking. Therefore, meticulous professional conduct is the only viable way forward and a code of conduct for human brain banks has been proposed4.

In conclusion, medical institutions that house brain banks should be aware of any internal wrongdoing through robust processes and policies that oversee tissue collection and usage. However, at present there is insufficient protection of those who are expected to guarantee proper handling of the tissues. Specifically, “whistleblowing” legislation, if it exists at all, merely works retrospectively, i.e. through delayed and often inadequate compensation that is tied to successful legal proceedings which are difficult to finance. In addition, victimization of a public interest advocate in retaliation for her/his reporting of criminal activity by people in authority is not recognized as a legal offence and as a result there is no effective deterrent. Therefore, in order to facilitate sustainable human tissue banking the recent judgment of the European Court of Human Rights8, which provides the first serious legal guidance on “whistleblowing”, should be used to create legislation that is safe for human tissue banking and banks for brains from children in particular.

Professor Manuel B. Graeber MD PhD FRCPath, Neuropathologist, The Brain and Mind Research Institute, University of Sydney, Sydney, NSW 2050, Australia; email: manuel@graeber.net

Competing interests: MG is the founding Chairman of the former University Department of Neuropathology at Imperial College London which he decided to close down in 2007 for ethical reasons related to brain banking to distance himself and his professional discipline (neuropathology) from the then Imperial College executive in response to their attempt to suppress his public interest disclosures. In 2008, MG won a legal case against that same executive in order to bring his documentation into the public domain. Ruling by the London Employment Tribunals, case of Professor M Graeber v. Imperial College of Science, Technology and Medicine (Case Number 2202785/2007), 7 May 2008. Funding provided by the British Medical Association is gratefully acknowledged.

Reference List

  1. Abbott A. Brain child. Nature 2011;478:442-443.
  2. Editorial. A priceless resource. Nature 2011;478:427.
  3. Graeber MB, Al Yamany M. Sustainable human tissue banking. Inaugural Biomarker Discovery Conference, Shoal Bay, NSW, Australia, 6-10 December 2010 (Abstract)
  4. Graeber MB. Twenty-first century brain banking: at the crossroads. Acta Neuropathol 2008;115:493-496.
  5. Rushe D. Meet the new 1%: healthcare CEOs replace bankers as America’s best paid. http://www.guardian.co.uk/business/2011/dec/14/healthcare-ceos-americas-best-paid
  6. Feuer A. Dentist Pleads Guilty to Stealing and Selling Body Parts. http://www.nytimes.com/2008/03/19/nyregion/thecity/19bones.html
  7. Smith R. Research misconduct: the poisoning of the well. Journal of the Royal Society of Medicine 2006;99: 232-237.
  8. Ruling by the European Court of Human Rights, case of Heinisch v. Germany (Application no. 28274/08), 21 July 2011
  1. The only way forward in many diseases is by harvesting tissues from those same diseases, and keeping the tissue for world experts to study. Biopsy and autopsy tissue banking is thus of paramount importance to society, especially organizations designed to advance knowledge for specific diseases on behalf of patients.

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