The recent comments by Bob Champion (Daily Mail, 10 Feb 2016) have highlighted the topic of brain donation in relation to ongoing concussion research. Brain donation will be an important part of the research we undertake in the years ahead but it will be managed in exactly the same way as all the other confidential material that we hold on our volunteers.
All the data we gather (be it blood samples, MRI scans or post-mortem brain tissue) are anonymized and batched so that the identity of the individual is concealed and their anonymity is guaranteed.
The ICHIRF researchers examining the blood biomarkers will have 100 results to look at and they will have no idea who donated the individual blood samples. The same applies to the MRI scans and to brain tissue donated by volunteers.
Donated brains will be batched and anonymized using a random 9-digit coding system. Groups of 5-10 samples will then be sent for review and reporting to 2 different international centers, specializing in concussion related, neuropathological research. These centers will have no idea if the samples came from control subjects (who have never had a concussion) or from retired jump jockeys or rugby players, and this will preserve the anonymity of the volunteers, as well as adding to the quality of the research.
The system for brain donation has not been finalized yet but the consent process will be rigorous and participation in the main ICHIRF research project is not linked to this in any way. Volunteers will be free to sign up for brain donation, or refuse, as they so wish.
There are, of course, a number of ways in which the results of brain autopsies can reach the public domain (such as those set out below) but, subject to our compliance with applicable laws and regulations or the wishes of the individual or his/her family, ICHIRF will ensure that the samples taken for this research project cannot be linked in any way to an individual volunteer or donor.
If a coroner feels that an examination of the brain is necessary to establish the cause of death, s/he can order an autopsy and the results will be made public when the results of the Coroner’s enquiry is announced. This happened in the case of Kenny Nuzum.
Post-mortem requests by the family.
Family members can ask for brain tissue to be examined, or re-examined, post-mortem and can publish the results if they so wish. This happened in the case of Jeff Astle.
Individual brain donations.
Individuals are free to donate organs for research with the proviso that the results be released into the public domain with the name of the individual freely available. This commonly happens in the USA – a recent example being the case of Ken Stabler (the former Quarterback for the Oakland Raiders).