You

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GTEx

GenotypeTissue

Expression

Project

Thank you

Your generous gift of tissues and 

clinical information to the GTEx 

project makes possible research that 

will help improve our understanding 

of common diseases, giving hope that 

we will find better ways to prevent, 

diagnose, treat, and cure these diseases 

in the future.

You can find more information

about the GTEx project at:

 http://genome.gov/GTEx

Supported by the Common Fund

Office of the Director

National Institutes of Health

US Department of

Health and Human Services
What is GTEx?

The Genotype-Tissue Expression project, or 

GTEx, is an important medical research study 

supported by the National Institutes of Health 

(NIH), one of the world’s foremost medical 

research agencies. The goal of GTEx is to 

increase the understanding of how changes 

in our genes contribute to common human 

diseases, in order to improve health care for 

future generations. 

Genes are the packets of information in the cells 

of our bodies that parents pass along to their 

children. Genes determine traits such as eye 

color, height, and blood type. Previous research 

has shown that certain changes in genes can 

increase a person’s risk of developing common 

diseases like cancer, heart disease, diabetes, 

and Alzheimer’s disease. How changes in genes 

affect the risk of having these diseases, however, 

is poorly understood. 

Why does GTEx need tissue

and organ donations?

Because common human diseases often affect 

a wide variety of different organs and types 

of tissues, GTEx researchers need to examine 

samples of as many types of tissues and organs 

donated by as many people as possible. 

Who can donate?

One group that can donate to the GTEx study is 

people who are having various kinds of surgery. 

If a surgery patient agrees ahead of time, tiny 

amounts of tissue removed during surgery, 

such as fat, skin, or muscle, can be donated 

for use in the GTEx project. Only tissue which 

needs to be removed for medical reasons can 

be donated to the GTEx project. Donating to 

the GTEx project will not cause any additional 

tissue to be removed. 

A second group that can donate is people who 

have agreed to donate organs (like kidneys, 

heart, and liver) or tissues (like bone and 

cornea) for use as medical transplants after 

they pass away. Donating to GTEx would not 

interfere with the use of the organ or tissues 

for transplantation, which takes priority. 

Compared to surgical donors, organ and tissue 

donors who have died can provide many more 

types of tissues for research studies.

The family of a deceased person also can 

donate their loved one’s organs and tissues 

for transplantation, and can donate unneeded 

organs and tissues to benefit research studies 

like GTEx. Even people who do not qualify 

to donate organs or tissue for transplants 

may still be able to donate tissue to GTEx for 

research. 

What happens to organs

 and tissues

that are donated?

Tissues and portions of organs donated to 

GTEx are stored in a “biobank” that preserves 

them for studies now and in the future. These 

studies will detect changes in genes and learn 

how much each gene is active in different 

tissues and organs. The patterns of genetic 

changes, like a fingerprint, are unique to each 

person. To ensure that GTEx donor tissues 

can be shared with many scientists for years 

to come, some of the skin and blood cells are 

treated so they will remain alive for a very 

long time. 

GTEx also stores clinical and genetic 

information about donors, such as their 

diseases, medications, and cause of death, 

after removing personal information that 

might allow others to identify the names of the 

donors. Scientists in academic, government, 

and commercial laboratories, worldwide, can 

ask to use the GTEx tissues and clinical and 

genetic information to help them study the 

role of genes in common diseases. 

Are there risks associated with 

being a GTEx tissue

or organ donor?

GTEx is careful to ensure that a donor’s clinical 

and genetic information remains confidential. 

Despite taking these precautions, there is a 

small possibility that someone might connect 

the name of a donor, or a blood relative, to 

this information. State laws and a federal law, 

the Genetic Information Non-discrimination 

Act (GINA), have been passed to help protect 

people from unfair treatment because of their 

genetic information.

Participation as a GTEx donor is voluntary. 

At any time, you may withdraw your 

tissues and related clinical information or 

those of your family member who died, 

although information and tissue samples 

already distributed to researchers cannot be 

withdrawn.