Researchers at UCSF Medical Center and their collaborators are trying to learn more about cancer and other diseases. Much of this research is done on human tissue. This resource will give you information about the use of human tissue in research and what it means to be a tissue donor.
Where does tissue come from?
During your surgery, some tissue may be removed from your body. This may be the main reason for your surgery, or the tissue may be removed for diagnostic or preventative reasons. After the surgery and all the tests have been done, some of your tissue may be left over. This left over tissue may be a piece of skin or bone or an internal organ or a very small amount of blood. This tissue may either be discarded or destroyed because it is not needed for your care, or you may choose to donate the tissue and blood for medical research.
Your care is always our first priority.
Any tissue removed from your body will always be used first and foremost to find out exactly what, if anything, is wrong with you and how you can best be treated. Choosing to donate tissue will not require removal of any extra tissue or change the care you will receive in any way.
Who can donate tissue and where will the tissue be kept?
Anyone undergoing treatment at UCSF can become a tissue donor. Your doctor may ask you to donate your tissue whether or not you are in good health. If you donate your tissue, it will be transferred to one of the UCSF Tissue Banks. If a researcher wishes to study human tissue, then he or she will ask the Tissue Bank for a tissue sample. No information that identifies you by name will be given to any of the researchers.
Why is research done with human tissue important?
Research with tissue can help to find out more about what causes cancer, how to prevent it, how to treat it, and how to cure it. Research using human tissue can also help answer questions about other health problems, such as diabetes, heart disease and Alzheimer's disease.
What type of research will be done with your tissue?
Many different kinds of studies may be done on human tissue. Some researchers may be able to develop new ways to treat or cure diseases. Other researchers may wish to find out if there are diseases that may be passed on in families (genetic research). Some of the researchers may help to develop new products, such as drugs and tests for diseases.
Who will do research on the donated tissue?
The tissue will be used primarily by researchers at UCSF. However, there may also be collaborative efforts with other universities and private companies.
Will you find out the results of the research?
Neither you nor your doctor will receive the results of research done with your tissue. This is because research can take a long time and must use tissues from samples from many people before results are known. Results from research using your tissue may not be ready for many years and will not affect your care right now, but the results of the research may be helpful to people like you in the future. For these reasons, the results will not appear in your medical records.
Will anyone have access to your medical records?
In order to understand the significance of the research done on your tissue, researchers may need to know some things about you, for example, your gender, your age, your health history, and your family history. The information from your medical records will be given to the researchers by the Tissue Bank records staff. However, as mentioned before, no information that identifies you by name will be given to the researchers without your consent.
Will your privacy be protected?
Your privacy will be protected as much as possible. The people in charge of the UCSF Tissue Banks will take careful steps to prevent any private information about you, such as your name, address, or phone number from being released to anyone. Any identifying personal information will be taken off any record associated with your tissue before it is studied and a code number will be assigned to the tissue. This would make it very difficult for any research results to be linked to you or your family.
Are there any risks to you for donating tissue?
There are no medical risks to you. However, while every effort is made to protect your identity, there is a small risk of loss of privacy. Because the study results will not be entered into your medical record, there should be no risk to you that your insurance will be affected in any way.
Are there any financial considerations?
There will be no costs to you if you agree to donate your tissue for research. Nor will you receive any money for donating your tissue. Even if the researchers are able to develop new products from the use of your tissues, you will not receive any money for your tissue donation.
Will you benefit from this research?
There will be no direct medical or personal benefit to you as a result of donating your tissue. However, the researchers hope to learn from this research and be able to help others in the future.
What if you have more questions?
If you have more questions about tissue donation, then please talk to your doctor or nurse. You may also call the UCSF Tissue Bank at (415) 476-0435 or you may call the Office of the Committee on Human Research or write to the Committee on Human Research at UCSF, Box 0962, San Francisco, CA 94143. The Committee on Human Research is concerned with the protection of the rights of people who volunteer to participate in human research.
What happens next?
Once you have read this, you will have an opportunity to talk with your doctor or nurse and make sure all your questions are answered. Then you can decide whether or not you want to donate your tissue for medical research. You are not obligated in any way to donate your tissue. The choice is up to you. Whatever you choose to do, your medical care will not be altered in any way. Your doctor or nurse will ask you if you want to donate your tissue, and you can ask them any questions and then tell them what you want to do. You do not have to explain your decision to anyone; you just have to say yes or no. You will be asked to sign a brief form to indicate whether or not you want to donate your tissue. This form will be part of your surgical consent form.
Will you be contacted in the future about this or other research involving tissue donation?
Yes, you may be contacted in the future about your health status. This will be done by staff from the UCSF tissue bank. Your privacy will continue to be protected.
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