The donation of brain and other tissue
2011: Ethics of dementia research
A lot of research can be carried out on living people but some of it cannot. As it is not yet possible to reproduce the human brain in the laboratory and as it would be unacceptable to take samples of the brain whilst the person is alive, researchers are very much dependent on post mortem donations of human tissue.
Such tissue is needed not only from people who had dementia but also from people who did not. The brain tissue of people who did not have dementia (known as control tissue) enables comparisons to be made with the tissue from people with dementia. Control tissue is often much less readily available than that from people with dementia, but both are needed. In addition, brain tissue from people with other conditions affecting the brain can also be used within dementia research as it can help determine what makes dementia different from other neurological conditions (Brains for Dementia Research, 2011).
Consenting to donation
The donation of one’s body parts and tissue, including the brain, is generally considered as an act of altruism and is in keeping with the principles of solidarity and reciprocity. This may be on the part of the person with dementia or of the person who is responsible for making the decision. Depending on legislation, which may differ from one country to the next, a person may be able to consent to brain tissue donation in an advance directive or through a previously appointed legal representative or officially recognised “trusted person”. Some people may be in the early stages of dementia but dying from another condition such as cancer or heart disease. Others may not have dementia at all but may be suffering physical or emotional pain in connection with their terminal condition.
In the case of people with dementia who might be able to consent (i.e. perhaps they have another terminal condition), one could ask what level of capacity is needed to be able to consent to post mortem brain tissue donation. For those who did not make such a decision themselves during their lifetime, one might ask what the best interests are of a person who is no longer alive. Consenting to the donation of brain and other tissue for dementia research is a sensitive issue. Questions about donation may make people with dementia aware of information about their condition for which they are not prepared or that they are not willing to acknowledge. Such attempts may interfere with coping mechanisms based on denial or hope. This may also be the case for their relatives and close friends.
In their comprehensive report on donation for medicine and research, the Nuffield Council on Bioethics (2011) considers the degree of information considered necessary for post mortem donation. They argue that minimal informal could be justified (particularly as people may not want to hear all the details about the process), provided that it is very clear that it is/was the donor’s wish to donate and that the person has had the opportunity to ask for any additional information s/he may require. If not in accordance with the person’s wishes, taking body parts from him/her would amount to treating his/her body as a means to others’ end (Nuffield Council on Bioethics, 2011). Understanding the person’s wishes is therefore of paramount importance.
The timing of consent
Brain and other tissue donation, like organ donation in general, could be considered by people well in advance of their probable death. When this is not the case, people are likely to be asked about it around the time of death.
Decisions must be made rapidly as brain tissue must be removed very soon after death if it is to be in an optimum condition and hence of greatest use for researchers. Timing is therefore essential but also problematic. If contact with families and friends is handled badly, they may feel under pressure to make a decision. If they are approached whilst in a state of great distress, their consent might not be truly informed as they may not have taken in all the information that they were given, may not have been able to weigh up the pros and cons of the options available and may have failed to understand the procedure for the removal of the brain tissue.
Psychological and emotional wellbeing
Based on an extensive literature review, the Nuffield Council on Bioethics (2011) highlight some of the main concerns that people have in connection with post mortem donation, namely that less effort will be put into resuscitation attempts, that more organs will be taken than agreed, that it will lead to disfigurement and that contemplating one’s own death may bring bad luck (the jinx effect). There may also be cultural or religious norms linked to how a person’s body should be treated, which those approaching potential donors should be aware of. People may also have spiritual beliefs of a more personal nature (i.e. which are not linked to an established religion). All these issues may affect the psychological and emotional wellbeing of people who are approached in connection with brain and other tissue donation, even if they eventually decide against donation.
In keeping with a palliative care approach, the wellbeing of relatives and close friends of people with dementia who have donated brain and other tissue (either through a personal decision or on the basis of a proxy decision) should also be protected before and after the extraction of the tissue. There may be cases where the person with dementia clearly expressed his/her wish to donate but his/her family did not realise or feel uneasy about his/her decision.
- People with dementia who appear to have the capacity to consent to the donation of brain and other tissue should be approached with great sensitivity, bearing in mind the possible impact of such a discussion on their psychological wellbeing.
- Great sensitivity should be exercised when approaching their close friends and/or their relatives in connection with a request to donate the brain or other tissue of the person with dementia.
- Whenever possible, obtaining consent to the donation of brain and other tissue should be a process, which takes place over a period of time, allowing the person with dementia to come to terms with the issue, ask questions, receive answers, reflect, discuss with others and eventually make a decision for or against donation.
- The decision to donate, if made, should be reassessed over time if possible.
- The provision of information to potential donors and proxy donors about the process should be adapted to the requirements and interest of the person concerned, bearing in mind his/her perceived willingness to receive it.
- Potential donors and proxy donors should be provided with as much information as they require and not obliged to hear details that they would find disturbing.
- Those responsible for obtaining consent to the donation of brain and other tissue should be knowledgeable about the procedure (i.e. how the procedure is carried out, by whom, where and when) and be able to communicate this with sensitivity if required.
- Signs that the person with dementia does not want to discuss the topic should be respected and the issue not pursued any further.
- The possible benefit of the person with dementia informing relatives and close friends of his/her decision to donate his/her brain or other tissue should be discussed.
- In view of the need for a fairly rapid decision, hospital staff and researchers (or their trained representatives) with the relevant expertise, should be readily available for discussion concerning a possible donation of brain or other tissue.
- Despite time constraints, families and relatives should not be placed under pressure to consent to the donation of brain or other tissue.
- Relationships are not always straightforward and people should not feel obliged to justify their decisions or reactions vis-à-vis their relatives and friends.
- Psychological support should be available to people with dementia as well as relatives and close friends who have been approached in connection with the possible donation of brain or other tissue from the person with dementia.
- The extraction of brain or other tissue should not interfere with religious, cultural or spiritual practices or beliefs.
- Those responsible for obtaining consent to the donation of brain and other tissue as well as researchers and anyone handling the tissue should be knowledgeable about and respectful of religious and cultural norms of donors.
- Brain and other donated tissue should be anonymised.
- Researchers should never know the identity of the donor.
- Donated brain and other tissue should be extracted, transported and stored appropriately.
- Donated brain and other tissue should be handled and disposed of respectfully.
- Maximum use should be made of brain and other tissue.
- Donated brain and other tissue should not be used for commercial purposes or sold to other researchers.
- Institutions authorised to receive donated brain and other tissue should have a clear policy of how such tissue is used.
Last Updated: Thursday 29 March 2012