Donating your tissue for research FAQs
Human tissue is used in scientific and medical research, to improve understanding of how diseases start and progress and what keeps us healthy. Researchers may find different ways of diagnosing disease, or develop new treatments. Find out more about what is involved, how to donate tissue and the role of the HTA.
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.
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 develop new treatments. Types 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, looking at how the immune system works to help understand how it combats diseases and researching how stem cells could be used to treat conditions like Parkinson's disease and multiple sclerosis.
If tissue or cells are removed during the course of treatment or a diagnosis, there may be some left over that can be used for research. Tissue from living patients - for example biopsy or blood samples - can ordinarily be used for research only with the person's consent. The HTA ensures that it is removed and stored in an appropriate and well managed way.
Consent is not required for research on tissue from living patients if the samples are anonymised (or coded to make sure patient or participant information is not identifiable) and the project has recognised ethics committee approval; or if the tissue samples were obtained before 1 September 2006 (when the Human Tissue Act came into force). Information for professionals on consent and HTA licensing requirements is available in our code of practice on 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 who seeks their consent, and that their wishes are documented.
Consent is always required for research on human tissue from deceased patients unless the tissue samples were obtained before 1 September 2006.
A person may consent for their tissue to be used for research after their death. 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 his or her behalf; or, if no one has been nominated, from a person in a ‘qualifying relationship' - this can be a partner, relative or friend. Read about consent and licensing requirements for tissue taken during a coroner's post mortem which may be used for research.
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 ask your treating physician.
If you want your tissue to be used for any medical research, or you may 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 stated in writing on a consent form. However, you should be aware that some tissue establishments may not be able to use your tissue at all if you impose very specific requirements for its use. If you are happy for your tissue to be used in any research relating to human health, you should consider giving what is termed ‘generic consent'.
A research tissue bank is a collection of tissue that may be used in many different research projects. Tissue that is being stored is often of a certain type; for example, tissue that is collected from people with a particular disease such as Alzheimer's or Parkinson's disease or from a part of the body such as the liver or lungs.
Banks also require tissue from people without a disease to act as a comparison for tissue from someone with a disease. For example, someone who has multiple sclerosis and someone who does not can both donate to a multiple sclerosis tissue bank. If people would like to donate tissue to a research tissue bank, they should contact the research tissue bank directly. The research tissue bank 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 charities that need donations have websites with contact information for potential donors. Read about the multiple sclerosis (MS) tissue bank at Imperial College London.
When people refer to donating their whole body to medical science, they usually mean donating their bodies to a medical school after their death (read body donation FAQs). Their bodies will be used to teach healthcare professionals and students about the human body. Whole body donation is different to donating tissue for research only. Click here to find out more about body donation.
Being on the NHS Organ Donor Register does not mean that a person has consented to tissue being used for research after death. Organ donation and tissue donation for research are not mutually exclusive and, depending on the circumstances, someone may be able to do both.
An HTA licence for research is granted to an organisation if it shows it complies with standards set down by the HTA. These requirements include: consent for the tissue to be used in research is taken by appropriately trained personnel and is recorded; confidentiality is maintained; the environment tissue is stored in is suitable; there are security measures to lock away the tissue; and the tissue is traceable.
Tissue banks may charge for providing donated tissue samples to researchers, including those working for private companies, so they can cover their costs. Where charging or cost-recovery is in place, the HTA expects research tissue banks to provide potential donors with sufficient information to ensure they understand that their tissue may be provided to researchers for a fee. The HTA also recommends that research tissue banks are transparent, by providing easily accessible information about how and why they charge, and to whom they will supply tissue samples. Potential donors can expect to be informed if their samples could be used for research involving the commercial sector, consistent with our code of practice on consent.