Biobanking

Donating samples after death for research use

As well as donating during life, people can also opt to donate their bodies or some of their organs to be used for research after they have died, so that knowledge about health and illness can be advanced. This is different to choosing to donate organs for transplant for the benefit of specific individuals. We asked people for their views about this.
 
Some said they had not thought before about contributing to research after their death; others said they were “pretending I’m not mortal” or had “put it to the back of my mind”, perhaps not wanting to tempt fate. There were others who had thought about it, but had not investigated it.
Many people were positive about the idea, whether or not they had thought about it before, but a few found it difficult to think about. 
The Human Tissue Authority provides a list of organisations which accept brains for research. Brain donation has helped with the discovery and treatment of diseases such as Alzheimer’s, Parkinson’s disease, Motor Neurone Disease and variant Creutzfeldt-Jakob disease.
 
Some people saw donating to living patients for transplants or donating to research as quite similar in principle. Most were happy to do either or both, but others drew distinctions and were less sure about research. 
It is important to note that registering for organ donation for transplant does not mean you have given consent for donation for research. Some people we spoke to were confused about this and believed that they had registered for any part of their body to be used for any purpose. The Human Tissue Authority gives the following guidance about making sure your wishes are formally recorded:
 
‘Under the Human Tissue Act 2004, written and witnessed consent for anatomical examination must be given prior to death; consent cannot be given by anyone else after your death. A consent form can be obtained from your nearest medical school and a copy should be kept with your Will. You should also inform your family, close friends and GP that you wish to donate your body…. If someone wants to donate their body for medical research but at the time of death it is discovered that a witness has not signed their consent form, the only option is donating their brain to a bank, however the brain bank would probably have to receive it within 48 hours. Brain banks usually accept consent from a next of kin but they have the right to decline.’ 
 
There were some people who were very positive about contributing to research after they died and had already made arrangements either for specific donations (such as their brain) or to include a statement in their wills that they would like their body to be used. 
The Human Tissue Authority explains that a donated body can be used for a range of purposes, including not just research but also teaching medical students about human anatomy or about surgical techniques (see 'Resources' section). 
Several people we talked to felt that when you were dead it would not matter whether or how your body was used, since you no longer needed it. Even so, it was easier for some to think about organ donation for transplant than for medical research.
Others did not agree with this entirely, feeling that they would prefer their bodies to remain whole.
There were some parts of the body people were more concerned about than others. For example both Elaine and Gareth found the idea of brain donation hard to think about. Julie and Louise had both heard others saying they would feel uncomfortable donating their eyes, though neither of them agreed with this personally. This may be because both the eyes and the brain have particular emotional significance for us. 
Sometimes people worried about their bodies being treated respectfully after they died. For example, some had seen or read about the human dissections performed on television by Gunther Von Hagens and thought they would not like their bodies used this way. Some also said they would not like their bodies to be used by medical students.
However, one person said she would be really pleased for medical students to be able to learn from her body. She saw a television programme about a medical school which holds an annual service for the families of people who had donated their bodies and felt this indicated that they did treat bodies with respect.
When they were considering donating after death, it was important for people to take account of their family’s thoughts and feelings, and whether they would be uncomfortable with it. Several had told their families they wanted to donate, whilst others were confident that their next of kin would know what they wanted and would organise it for them. 
 
However, it is important to note the guidance above from the Human Tissue Authority that consent for research use must be given by the donor before death. This is different to donation for organ transplant, for which the next of kin can give consent if the donor’s own wishes are not known (see our section on 'Organ Donation' for more information).
 
There is further discussion of ethical issues in The Nuffield Council on Bioethics report ‘Human bodies' donation for medicine and research’. 

Last reviewed February 2016.
Last updated February 2014.

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email