Donating tissue or cells for research

Why Your Help is Important

Human tissue and cell samples are essential for clinical research, for controlling the quality of laboratory tests and for training doctors and laboratory scientists. We need your permission to make use of surplus samples left over from your treatment for such purposes.

The donation of your samples will contribute to medical advances that will benefit other patients and future generations.

The purpose of this leaflet

This leaflet tells you about:

• what happens to tissue samples and samples containing human cells collected from patients during treatment, and
• how to give permission to allow surplus tissue or cell samples to be used for research and teaching.

Introduction

Cambridge University Hospitals NHS Foundation Trust (‘the Trust’) is a leading teaching hospital and bio-medical centre, where many tissue and cell samples are taken from patients each day for laboratory tests. Examples of these specimens include blood samples, tissues removed during operations, and urine.

The Trust is also a major centre for research into the causes of diseases and their treatment.

Some research projects use tissue samples taken with permission specifically for that project. However, many projects benefit from the use of tissue samples that are no longer needed after the necessary diagnostic tests have been completed, provided you give us permission to do this.

The information in this leaflet will help you to understand what happens to your tissue after it has been collected. If you have any specific questions please do not hesitate to ask your nurse or doctor who will be very happy to discuss these with you.

What are tissue samples?

Tissue and cell samples include blood, urine, saliva and solid tissue such as appendix, skin or muscle.

How is a diagnosis made?

Samples of urine, saliva and blood may be used to examine the contents of the cells or their chemical content.

Most solid tissue samples are first placed in a chemical solution (formalin) to preserve them. Small samples (biopsies) are analysed in their entirety.

Sometimes pieces (about the size of a postage stamp) are chosen from larger samples by the pathologist to examine under the microscope. These small tissue pieces are placed into plastic containers and covered by hot wax, which cools and becomes hard; these are called tissue blocks. Thin slices from tissue blocks are later cut and placed on slides for examination under a microscope to help the pathologist make the diagnosis. Other tests may also be done on this tissue. The pathologist sends the tissue diagnosis report to your doctor (the histopathology report).

What happens to your tissue after the tissue diagnosis has been made?

Samples of urine, saliva and blood are only kept for a few weeks and are then disposed of by incineration. Tissue samples are routinely stored for at least 10 years by the Trust’s Histopathology department, in case any further analysis is required in the future.

Any of the tissue sample that is not used for diagnostic tests is referred to as ‘surplus tissue’. It would be helpful for us to use this surplus tissue which would otherwise be destroyed.

What else can happen to your surplus tissue?

Surplus tissue is essential for clinical research, for controlling the quality of laboratory tests and for training doctors and laboratory scientists.

We can only use your surplus tissue for research with your consent. With your donation to the Trust’s Human Research Tissue Bank we hope to make advances that will benefit other patients and future generations.

If I agree to donate my surplus tissue what would it be used for?

All research using human tissue must be approved by the Health Research Authority and/or National Research Ethics Service.. This ensures that the tissue samples are treated in an appropriate way, and used for a worthwhile purpose. The CUH generic consent form does not allow tissue to be released for animal research.

How can I donate my surplus tissue to the Trust’s Human Research Tissue Bank for teaching, quality control and research?

At some stage during your visit to the Trust, you may be asked to sign a form indicating whether you wish to donate surplus tissue, and you may be asked to provide an additional small blood sample (10ml or two teaspoons). We also request that we can collect basic clinical information from your electronic hospital record for research purposes. Please remember that our priority is making a diagnosis and treating your disease. Your medical treatment will not be affected in any way if you do not want your surplus tissue including the additional blood to be used for non-diagnostic purposes.

Is the information about me and my tissue treated confidentially?

Basic information from your medical notes (such as age, sex and diagnosis) may be provided to researchers along with your surplus tissue or blood sample. The researchers will never be given any identifiable information (such as your name or contact details). All information is kept strictly confidential.

For how long and where is surplus tissue, including the additional blood sample, stored?

Surplus tissue, including the additional blood sample, can be used for research as soon as it is taken from your body but it can also be stored for many years before it is used. Surplus tissue, including the additional blood sample, is placed in a ‘tissue bank’. The Trust’s Human Research Tissue Bank is licensed by the Human Tissue Authority with Licence Number 12315 (opens in a new tab) and as such is strictly regulated.

Will I always know what research is being done on my tissue?

As medical science changes quickly, it is not always possible to tell you about the individual research projects that may use your tissue. The Cambridge Biomedical Campus has many active research groups and information about current research can be found on the NIHR website (opens in a new tab).

Could genetic research be performed on my tissue?

Yes. Many diseases are caused by abnormalities in genes. For example, tumours often grow because a genetic abnormality develops in a very small area of your body. To discover why a tumour has developed, we compare genes in tumours and genes in normal tissue from the same patient. If we find differences between these sets of genes, it may help us find the cause of this type of tumour.

Once the cause of a disease is known, there is a better chance of developing more specific treatments. Tissue released under the ethical approval of the Addenbrooke’s Human Research Tissue Bank will be de-identified, and therefore your genetic information will be kept confidential. This also means that no genetic information resulting from the research will be provided to you. The Addenbrooke’s Human Research Tissue Bank also provides tissue samples to other research approved by the National Research Ethics Services and/o the Health Research Authority

Could my tissue be used by any other organisations?

Yes. Our research is often done in conjunction with other hospitals, universities, or in some cases commercial companies, in the UK or abroad, so there is a possibility that your tissue could be sent to another organisation for a specific research project. These projects are always reviewed and approved by the National Research Ethics Service and /or Health Research Authority. In all cases, the tissue is de-identified, so the receiving organisation will not know your personal details.

Can I change my mind?

Yes, at any time. If you no longer want your surplus tissue to be used for research, you can withdraw your consent by contacting the Patient Advice and Liaison Service (PALS) below. Your surplus tissue will then be disposed of in an appropriate manner.

Further information

Information on the National Research Ethics Service can be found on the Health Research Authority website (opens in a new tab).

Further copies of this leaflet can be downloaded from our website (opens in a new tab) or by contacting us at:

Patient Advice and Liaison Service,
Addenbrooke’s Hospital,
Cambridge, CB2 0QQ
Tel: 01223 212756