Given choice, bereaved families will donate tissue for medical research
7 November 2007
Families will choose to donate a deceased relative’s tissue if given the choice and information explaining the need for human tissue to be used in medical research. This is the conclusion of a two-year pilot project. It found that 96% of families approached will allow scientists to retain tissue samples from their loved one for the purpose of research. And almost one in five are prepared to donate whole organs.
The Sudden Death Brain and Tissue Bank is a pilot project funded by the Medical Research Council and led by Professor Jeanne Bell of the University of Edinburgh and NHS Lothian. The results are published in the Journal of Pathology.
Brain tissue banks store brain samples from people who have died of a known condition, for example HIV/AIDS and Alzheimer’s disease. The samples are then studied by comparison with “normal” brain tissue, to learn more about how specific diseases affect the brain. However, there is a worldwide shortage of normal brains available for research, the tissue is crucial to research progress and so the sudden death brain bank was set up to address this need.
The project also provided an opportunity to collect tissue from people who died suddenly due to underlying conditions like depression, schizophrenia or a drug or alcohol addiction. Again there is an extreme shortage of brain tissue for use in the study of these conditions.
Beginning in March 2005, Professor Bell set out to measure the success rate of obtaining authorisation to retain brain tissue from suddenly bereaved families, to assess the range and quality of tissue samples for use in research and to assess the relative’s experience of the authorisation process. In total, 111 families were approached.
Working together with the Scottish Crown Office, the procurators fiscal, the police and with the permission of local ethics committees, a specifically trained nurse, Mrs Tracey Millar, who is a member of Professor Bell’s team approached the bereaved families of people who had died suddenly. The team discovered that the overwhelming majority of people were happy to donate tissue.
Professor Jeanne Bell explained why collaborating with the forensic post mortem service is important:
‘‘Hospital post mortems are now rare and people who die suddenly and undergo a forensic examination are more likely to have a normal brain. In addition, there are some disorders of the central nervous system that are associated with sudden death, including depression and schizophrenia, drug and alcohol addiction and sudden infant death syndrome, all conditions that urgently require further research.’’
‘‘In our experience, if families are given information about what will happen to the tissue samples they provide and the choice to donate tissue, in the majority of cases they will do so. In the sudden death brain bank trial, 96 per cent of the families we approached donated tissue for use in research. Only 4% of families chose not to donate tissue and in all of these cases expressed their regret in not feeling able to do so.’’
Professor Bell continued:
‘‘In a follow up survey that took place after donation, family members reported that they have felt empowered by the experience and said that the main reason they agreed to donate tissue was their wish to do something to help others.’’
‘‘There is an assumption that families will say no, or that that making the request to use their relative’s tissue in research is likely to cause distress or offence. This pilot study has shown that actually, this is not the case. In the past, the underlying reason for the distress experienced by families has always been the lack of consultation and absence of information afforded to them. Anger was caused by the fact that they were neither aware of nor involved in decisions about what happened to their relatives after death.’’
In the follow up survey, sent to families 6 months after the death and donation of tissue, respondents expressed a clear view that the opportunity for research donation should be open to all bereaved families.
The research group has constructed a website that will provide information about the activities and research output of the Sudden Death Brain and Tissue Bank.
Professor Bell concludes:
‘‘Even when suddenly bereaved, the vast majority of families are willing to support research by allowing tissue to be removed during post mortem examination and stored in the brain bank for later use in medical research. From a scientific point of view, the potential to acquire research samples of normal brain tissue and certain brain disorders which require further study, suggests that efforts to work with the forensic post mortem service and to provide families with information are extremely worthwhile.’’
Following the success of this pilot scheme, the MRC is actively exploring the feasibility of implementing a brain tissue bank on a national scale.
Notes to editors
• Families were approached by telephone the day before the forensic post mortem examination was due to be performed. The conversation was then followed up with a letter. Relatives’ experience of the tissue donation process was evaluated in a survey sent out 6 months after the event.
• An information leaflet was designed in a question and answer format to assist families in understanding what was being asked of them when approached to donate their relative’s tissue for research.
• The survey found that the experience of being asked for tissue does not add further distress to bereavement and no complaints have been received.
• Requests for tissue were made to the families’ of people who died suddenly between the ages of 1 and 89 and who were likely to have a normal brain or who had symptoms of a central nervous system disorder including psychiatric illness.
• In Scotland, sudden deaths are notified to the Procurators Fiscal, the equivalent of Coroners in England and Wales.
• The Sudden Death Brain and Tissue Bank was set up within the Edinburgh Neuropathology Post Mortem Service.
• The tissue bank was launched in March 2005, website: www.edinburghbrainbanks.ed.ac.uk
• The collection and authorisation (Scotland) or consent (England) for retention of tissue at post mortem for use in medical research is governed by the Human Tissue Act (HTA) 2004 and the Human Tissue (Scotland) Act (HT(S)A) 2006.
• When a person dies suddenly, a forensic post mortem is carried out. The post mortem itself if not authorised by relatives. More forensic post mortems are performed than hospital post mortems because the cause of death is usually known for people who have been hospital patients.
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