What is tissue?
Why do people do research with tissue?
How do you collect the tissue that I give to research?
What happens to my tissue after it is collected?
Will I find out the results of the research using my tissue?
Why do you need information from my health records?
How is my privacy protected?
What are the risks to me if I give my tissue to research?
Can I change my mind?
What if I have more questions?
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.
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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.
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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.
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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.
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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.
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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.
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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. |