Medical researchers should be allowed to take the brains of deceased patients regardless of the wishes of relatives, a new study has suggested. In a bid to ensure more brains are made available to British researchers in the battle against neurological diseases such as Alzheimer’s and Parkinson’s, doctors and coroners should have more power to approve brain donations for research despite protests from family members.
The concern is that declines in the numbers of post-mortem examinations in the UK will result in an “inability to secure brains and brain tissue” for the vital research into such diseases. Medical scientists have particular difficulties obtaining unaffected or “normal” brain tissue, which acts as a necessary control in the disease investigations.
“Without sufficient quantities of both ‘diseased’ and ‘normal’ tissue, there is a real risk that research, which relies on numbers of statistical significance and control data, will be stifled or might lead to incorrect conclusions and improper solutions,” the new paper, published in the Medical Law Review, warns.
The authors, Shawn Harmon and Aisling McMahon from Edinburgh University, say the decline is due to factors such as the organ retention scandals of the 1990s at the Bristol Royal Infirmary and Li verpool’s Alder Hey Children’s Hospital.
Following the scandals, the Human Tissue Act 2004 and Human Tissue Scotland Act 2006 were established to protect the rights of deceased individuals and their families. The acts regulate the handling of human tissue in the UK.
Under current guidelines, brain tissue donations are made when an individual decides to donate and records their wishes formally and their relatives are aware and engaged. In other instances, an individual makes no decision about donation or fails to inform anyone of their wishes, and their relatives are approached after their death.
However, according to the Edinburgh researchers, some relatives object to donating the brain to the point where they can override the deceased’s own reported wishes. The researchers argue that the public good in helping solving brain diseases should mean that in the event that no known donation wishes have been expressed by the deceased before death, doctors and coroners “should consent to donation for research … and be able to trump most objections raised by the family in other situations”.
They argue that the priorities of society are becoming equally if not more prevalent than those of the family of the deceased. The total cost for brain disorders in the UK in 2010 was approximately £109bn. In 2012, the Neurological Alliance warned that the NHS was facing a “neurology time bomb” as the UK’s ageing population continues to live longer with brain-related diseases.
Dr Harmon said: “We need to recognise that there are several interested parties [with brain donations] and our argument is that the party with the strongest interest is actually the public, and that the way things operate now doesn’t recognise the interest that the public has. It may not be about giving doctors and others the power to veto what families want, but there does need to be a more open conversation about what interest the public has.”
Professor Seth Love, director of the MRC UK Brain Banks Network, said the arguments raised were simply unfeasible and could create a level of distrust between brain banks and the public. “I just don’t think it would work, particularly as the coroners and doctors would be very anxious about upsetting the next of kin. I understand the arguments, but I just don’t see that this would end up being acceptable.”
Under the Human Tissue Act 2004, there must be written consent before donating a brain. This can be provided long before death, by an individual contacting a local brain bank; just before death, by being given to a doctor; or after death by the relatives of the deceased person.
The brain needs to be removed within 72 hours of the person’s death as the tissue will begin to deteriorate without a blood supply, making it unusable for research.
Dr Sue Lishman, president elect of the Royal College of Pathologists, explained that these are conducted much like any other procedure. “It’s like the final surgical operation,” Dr Lishman said. “People are treated with the same level of respect as if they were in an operating theatre having surgery.”
The retrieved brain is divided in two; one section is stored in formalin for neuropathological diagnosis, while the other is frozen and stored at minus 80°C in the brain bank. In some cases, some of the spinal cord is also removed. Researchers contact the brain bank in order to receive small samples of the specific type of brain tissue they require.
The UK has 10 brain banks, some of which are linked to research charities. In 2013, more than 700 brains were banked. The tissue they store is available to researchers all over the world.
For more about the MRC UK Brain Banks Network and brain donation, visit mrc.ac.uk/brainbanks