Donating your tissue for research
Donating your tissue to a research establishment is a valuable gift - your donation will become an important resource.
The Human Tissue Authority (HTA) does not collect human materials, but we license and inspect the organisations that do. Our role is to make sure that these organisations remove, store, and use brains, bodies and tissues in an appropriate, respectful and well-managed way, and that the wishes of individual patients and their families are respected.
The HTA’s regulation helps ensure that tissue is stored to high standards, to be of most use to healthcare training and research.
We know that more people are willing to donate in the knowledge there is an effective regulator that monitors and inspects organisations against certain standards.
By studying human tissue, scientists improve their understanding of how diseases start and progress, and what keeps us healthy. They may find different ways of diagnosing disease or developing new treatments. Examples of research involving human tissue include:
Developing screening tests for different types of cancer
Testing new treatments for conditions such as heart disease and diabetes
Exploring how the immune system works to help understand how it combats diseases
Researching how stem cells can be used to treat conditions like Parkinson’s, diabetes, and multiple sclerosis
The HTA's role
The HTA licenses organisations that store human tissue for research. We believe that good regulation supports good science, which in turn leads to improved healthcare. Our regulatory framework ensures that consent is sought, which supports public confidence in the way that human tissue is used. One of the HTA's key strategic aims is to ensure that tissue-based research is not held up by our regulation. Research funders tell us that regulation of the storage of human tissue in research has driven up standards.
The HRA's role
The Health Research Authority's (HRA) role is to protect and promote the interests of patients and the public in health and social care research. The HRA are one of a number of organisations that work together in the UK to regulate and approve different aspects of health and social care research. Most of the HRA’s functions apply to research undertaken in England but they also work closely with the other countries in the UK to provide a UK-wide system.
Many members of the public want the opportunity to participate in research. The HRA make sure that health and social care research involving them is ethically reviewed and approved, that people are provided with the information they need to help them decide whether they wish to take part, and that their opportunity to do so is maximised by simplifying the processes by which high quality research is assessed. In doing this, the HRA will help to build both public confidence and participation in health research, and so improve the nation’s health.
How to donate your tissue
Tissue from living people
If tissue or cells are removed during the course of diagnosis or treatment, there may be some remaining that can be used for research.
If people do not want their tissue to be used for any medical research, or they want it to be used only for specific types of research, it is important that they make this clear to the healthcare professional seeking their consent, and that their wishes are documented.
Tissue from deceased people
If you are suffering from a disease or condition, you may be asked by the person treating you if you would like to donate tissue after your death. If you would like to donate and have not been approached, you could speak to your treating physician.
If you want your tissue to be used for any medical research, or if you want it to be used only for specific types of research, it is important that you make these wishes clear to the healthcare professional who seeks your consent, and that they are written on a consent form. However, some tissue establishments may not be able to use your tissue at all if you apply too many limits on how it can be used.
Consent is always required for research on human tissue from deceased patients unless the tissue samples were obtained before 1 September 2006. If there is no record of the deceased person’s wishes, consent for research can be obtained from someone nominated by that person to act on on their behalf or from someone in a qualifying relationship to them at the time of their death.
Donating to a tissue bank
A research tissue bank is a collection of tissue that may be used in different research projects. Tissue is often collected and stored according to a specific purpose or area of research. For example, a research tissue bank may contain tissue collected from people with a particular disease such as Alzheimer’s disease or Parkinson’s disease, or from a part of the body such as the liver or lungs.
Tissue banks may charge for providing donated tissue samples to researchers, including those working for private companies, so they can cover their costs. The tissue bank can give you more information about this when you contact them.
If you would like to donate tissue to a research tissue bank, you should contact the research tissue bank directly. They will be able to advise whether it is possible to donate tissue and give more information about what donation entails. Most research tissue banks or disease research charities that need donations have websites with contact information for potential donors.
Cord blood donation or banking
Find out more about donating your cord blood or banking your cord blood.