Brain and spinal cord donation for hospital and mortuary staff
Many people, with the agreement of their relatives, want to support research into dementia and other brain diseases by donating their brain to a brain bank for research.
Brain banks encourage potential donors to provide written consent while they are alive so that brain donation can proceed smoothly after they have died. Donated brains can only be retrieved on premises licensed by the Human Tissue Authority (HTA) for removal and storage of tissues for use for research (see 1 below). Most of these premises are mortuaries in NHS hospitals.
To ensure that brains are in the best condition to be used for research, retrieval should ideally take place as soon as possible after death. Whilst brain donation proceeds smoothly in many cases, there have been occasions where a brain has not been retrieved because mortuary staff have been uncertain about whether they could assist, or felt that the “green form” was required before the donation could go ahead. Sometimes they are worried that proceeding with the retrieval will interfere with the work of the Coroner. If this happens, it can cause a great deal of distress to families and can result in a wasted donation.
This guidance document for mortuary and other hospital staff has been prepared by the MRC UK Brain Bank Network in collaboration with the Human Tissue Authority. We hope it will provide clarity and reassurance about whether retrieval can take place, with the aim of avoiding the unnecessary distress caused to families when the wishes of their loved ones cannot be fulfilled. It has the support of the Chief Coroner, who encourages organ donation wherever possible for the benefit of research and the greater public good.
Who should I expect to be contacted by to request brain retrieval?
The brain bank organising the donation will contact you to ask you to perform the retrieval, they will inform you of the way they wish the brain to be removed and stored until collection and they will provide you with a copy of the consent form.
Who is responsible for ensuring consent is valid?
It is the responsibility of the brain bank to ensure that consent has been given, and they will provide you with a copy of the consent form when making arrangements for the retrieval. If you do not receive a copy of the consent form, or if you are uncertain about it for any reason, you should contact the brain bank co-ordinator as soon as possible. On no account should you proceed with the retrieval without confirmation from the brain bank that appropriate consent has been obtained under the Human Tissue Act 2004.
We cannot do the retrieval as we do not have an HTA licence for removal of tissue for research?
The vast majority of mortuaries have a licence for removal of tissues for research, as well as for post-mortem examination. If in doubt, there is a list of licensed establishments on the HTA website or you can contact the HTA directly.
Is it true that we cannot proceed without the MCCD?
This is correct. The medical certificate of cause of death is the permanent legal record of the fact of death and is a pre-requisite to brain donation for research. Brain banks encourage patients who are on an ‘end of life care’ pathway and their families to remind their doctor that arrangements have been made for brain donation, to help avoid delays at the time of death.
Do we need the green form (the certificate of burial or cremation) before tissue removal?
There is no legal or HTA requirement for the death to be registered and the certification of burial of cremation to be obtained before tissue removal takes place. Insistence on the green form (or ‘body release forms’) can lead to donations having to be declined and valuable research tissue being wasted. Provided there is evidence of consent, mortuary staff can be reassured that they are not acting unlawfully by proceeding without a green form.
Is there a time limit for donation from the time of death?
Most brain banks require the donation to be retrieved within 48 hours of death, as the preservation of the brain suffers if the time from death to donation from death is prolonged. Donations are most often delayed by concerns over whether a “green form” is required, or whether the death needs to be registered. As stated above the “green form” does not need to be completed and, the death does not need to be registered before a donation can be retrieved.
What if there is a coroner’s post mortem?
Where the death is violent or unnatural, or is sudden but the cause is unknown, it requires referral to the coroner; in such cases, provided the coroner does not object, the retrieval can go ahead. In coming to a decision, the coroner will have consulted with the pathologist who has been directed in the case. Whilst we understand that mortuary staff may have concerns about the possible later involvement of a coroner, no tissue is destroyed during the retrieval or preservation of the brain, which can be examined at a later date if there is a need for a coronial post-mortem examination.
When is the consent obtained out of date?
There are no time limits for which signed consent forms remain valid and there are no legal requirements for the format of consent forms. There is no need to ask for new forms to be signed if consent was written down by the donor several years before he or she died. In the unlikely event that you have reason to believe that the person changed his or her mind since documenting consent, the retrieval should not go ahead and the brain bank should be informed.
Do we need a hospital PM form to be signed in addition to the brain bank consent form?
The brain bank consent form contains all relevant permission and information required to carry out the retrieval of the brain and to use it for research. The completion of an additional hospital PM form is not necessary. If consent has also been given for a hospital post-mortem examination, consent for removal of the brain and its use for research can be recorded on the hospital consent form and an additional brain bank consent form is not required.
We do not have the resources or the necessary equipment, do we still have to assist in research?
You are under no obligation to help brain research. However, brain banks rely on the assistance and good will of mortuaries throughout the country to be able to fulfil the wishes of donors and their relatives, and to provide researchers with essential human tissue for research. Most brain banks are able to pay a small fee to cover costs. Please let the brain bank know if your hospital has a policy of not allowing its mortuary staff to retrieve tissue for research, so that the brain bank can contact the Chief Executive to discuss this. If you think you do not have the necessary equipment to enable you to undertake brain and spinal cord retrieval, the brain bank may be able to assist.
We would like to help and would be willing to undertake tissue retrieval in our own time for a payment to cover costs, but our hospital has a policy of not allowing this, what should we do?
Please let the brain bank know if your hospital has a policy of not allowing its mortuary staff to retrieve tissue for research, so that the brain bank can contact the Chief Executive to discuss this.
We do not have the time or expertise to carry out tissue removal, can anything be done about this?
Brain banks and researchers understand that mortuary staff have a busy job but rely on your good will to be able to carry out their work and provide families with the opportunity to support research. Brain retrieval can be carried out in approximately 30 minutes and brain bank staff are always happy to provide guidance and training. They are happy to discuss this further or to agree the terms under which brain retrieval can take place.
What will happen after the retrieval has taken place?
The brain bank involved will collect the tissue or arrange collection by a reputable courier and transfer it to their premises for processing and diagnosis. They will inform the family the donation has gone ahead and will handle all further correspondence. They will arrange collection of the body by the family funeral director if necessary and organise any agreed payments to the mortuary staff.
Are we allowed to store the tissue as we don’t have a research licence?
The vast majority of mortuaries have a licence which allows them to store human tissue for a purpose such as research. Brain banks normally allow about two weeks before collecting a brain so that it is fully fixed before transport, but if this is problematic for any reason, brain banks can arrange for earlier collections.