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U.S. National Institutes of Health
Last Updated: 03/05/10

Patient Information Sheet

How is Tissue Used for Research?

Where does tissue come from?

Whenever a biopsy (or surgery) is performed, the tissue that is removed is examined under the microscope by a trained doctor to determine the nature of the disease and assist with the diagnosis. Your tissue will always be used first to help make decisions about your care. After all tests have been done, there is usually some left over tissue. Sometimes, this tissue is not kept because it is not needed for the patient's care. Instead, a patient can choose to have the tissue kept for future research. People who are trained to handle tissue and protect the donor's rights make sure that the highest standards are followed by the xyz. Your doctor does not work for the xyz, but has agreed to help collect tissue from many patients. Many doctors across the country are helping in the same way. If you agree, only left over tissue will be saved for research. Your doctor will only take the tissue needed for your care during surgery.

Why do people do research with tissue?

Research with tissue can help to find out more about what causes cancer, how to prevent it, and how to treat it. Research using tissue can also answer other health questions. Some of these include finding the causes of diabetes and heart disease, or finding genetic links to Alzheimer's.

What type of research will be done with my tissue?

Many different kinds of studies use tissue. Some researchers may develop new tests to find diseases. Others may develop new ways to treat or even cure diseases. In the future, some of the research may help to develop new products, such as tests and drugs.

Some research looks at diseases that are passed on in families (called genetic research). Research done with your tissue may look for genetic causes and signs of disease.

How do researchers get the tissue?

Researchers from universities, hospitals, and other health organizations conduct research using tissue. They contact xyz and request samples for their studies. The xyz reviews the way that these studies will be done, and decides if any of the samples can be used. The xyz gets the tissue and information about you from your hospital, and sends the tissue samples and some information about you to the researcher. The xyz will not send your name, address, phone number, social security number, or any other identifying information to the researcher. -see other side-

Will I find out the results of the research using my tissue?

No, you will not receive the results of research done with your tissue. This is because research can take a long time and must use tissue 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 they may be helpful to people like you in the future.

Though research involves the test results of many different people, your biopsy result involves only you. Your doctor will give you the results of your biopsy when results are known. These test results are ready in a short time and will be used to make decisions about your care.

Will I benefit from the research using my tissue?

There will be no direct benefit to you because your tissue may not be used for some time after you donate it and because research can take a long time. However, it is hoped that the results of research on your tissue and tissues from other patients will provide information that will help other patients in the future. Your tissue will be helpful whether you have cancer or not.

Why do you need information from my health records?

In order to do research with your tissue, researchers may need to know some things about you. (For example: Are you male or female? What is your race or ethnic group? How old are you? Have you ever smoked?) This helps researchers answer questions about diseases. The information that will be given to the researcher includes your age, sex, race, diagnosis, treatments, and possibly some family history. This information is collected by your hospital from your health record and sent to xyz but without your name or other identifying information. If more information is needed, xyz may send it to the researcher.

Will my name be attached to the records that are given to the researcher?

No. Your name, address, phone number and anything else that could identify you will be removed before they go to the researcher.

How could the records be used in ways that might be harmful to me?

Sometimes, health records have been used against patients and their families. For example, insurance companies may deny a patient insurance or employers may not hire someone with a certain illness (such as AIDS or cancer). The results of genetic research may not apply only to you, but to your family members. For diseases caused by gene changes, the information in one person's health record could be used against family members.

How am I protected?

The xyz is in charge of making sure that information about you is kept private. The xyz will take careful steps to prevent misuse of records. Your name, address, phone number and other identifying information will be taken off anything associated with your tissue before it is given to the researcher. This would make it very difficult for any research results to be linked to you or your family. Also, people outside the research process will not have access to results about any one person which will help to protect your privacy.