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U.S. DEPARTMENT 

OF HEALTH AND

HUMAN SERVICES

National Institutes 

of Health

Providing Your Tissue 

for Research: What You

Need To Know
You have been asked to provide some of your tissue for medical

research. Tissue helps researchers find new and better

treatments for people. Before you make a decision to let

researchers use your tissue, it is helpful to learn more.

What is tissue?

Tissue can include materials from your body 

such as skin, hair, nails, blood, and urine.

Why do people do research with tissue?

Research with tissue can help us prevent and

treat diseases such as cancer, diabetes, and

Alzheimer’s. By giving your tissue, you could

help researchers gain knowledge that may

possibly save lives.

Your tissue may be used in all types of

research, such as finding the causes of disease,

developing new tests or new drugs. Your

tissue may also be used for genetic research,

or research looking at diseases that are passed

on in families. This research will help

scientists better understand how genes affect

health and illness.

You do not get to decide what kind of

research your tissue is used in, just as you do

not get to decide who gets your blood when

you donate at a blood drive. You will not

profit from any of the products developed

from the research. Products are not often

developed from just one person’s tissue.

However, you will have the reward of

knowing you helped researchers find new

ways to prevent and treat diseases.
How do you collect the tissue that I give to research?

The tissue that you give to research is leftover

tissue from a medical test, for example a

blood test. Even though your doctor only

takes the amount of tissue he or she needs for

the medical test, there may still be some

leftover tissue. Doctors usually destroy this

unneeded tissue, but you may choose to allow

this leftover tissue to be stored and used for

future research. Regardless of your decision,

it will not affect your care. Remember, your

tissue cannot be used for research without

your written consent.

What happens to my tissue after it is collected?

After your doctor completes all your medical

tests, he or she will send the leftover tissue to

a tissue bank along with some information

about your general health. (A tissue bank is a

place where the tissue is protected and

stored.)

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

You will receive the results of your medical

test (e.g., biopsy, blood test), but you will not

get the results of the research performed with

your leftover tissue. Tissue research takes a

long time and requires tissue samples from

many people before results are known; results

may not be ready for many years. These

results do not affect your care when you

donate the tissue. 
Why do you need information from my health records?

In order to do research with your tissue,

researchers may need to have some

information about you. This information

helps them learn more about specific diseases.

Information that researchers ask you for may

include:

• Your gender 

• Your racial or ethnic group

• Your age

• Whether you smoke.

Researchers may also need information about:

• The date of your diagnosis

• Treatment you have received

• Your family history

• Your medical history.

How is my privacy protected?

To protect your privacy, your tissue will be

coded with a random number instead of your

name. Your name, address, phone number,

Social Security number, date of birth, and

anything else that could identify you will be

removed before the records are sent to the

researcher. The researcher will not be able to

identify you. 

The tissue bank is in charge of keeping your

information private. They will take careful

steps to prevent the misuse of records. People

will not have access to your personal

information. Tissue banks are not allowed to

release your personal information without

your consent. 
What are the risks to me if I give my tissue to research?

There are few risks to you. The greatest risk

is the release of information from your health

records, but the tissue bank will protect your

records so that your name, address, and

phone number will be kept private. The

chance of these personal facts being given to

someone else is very small.

In some cases, health records can be 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. However,

since personal information is removed from

research samples, the risk of your privacy

being violated is very small.

Can I change my mind?

Yes. You can change your mind about letting

researchers use your tissue at any time.

Contact your doctor if you do not want your

tissue to be used in any future research. The

doctor will contact the tissue bank and ask

them to destroy or return the rest of your

tissue. However, tissue already used for

research cannot be returned, and the data

resulting from a study of this tissue may be

used in published research. The tissue bank

will return or destroy all the rest of your

tissue. 

What if I have more questions?

If you have any questions, talk to your doctor

or nurse. Or call the research review board

listed on the informed consent form.
Visit National Cancer Institute’s Web site :

www.cancer.gov

or call

1-800-4-CANCER

NIH Publication No. 06-5864

December 2005