Biobanking

By taking part in biobanking, St. Jude patients, families, and others help researchers better understand diseases, find new treatments, and keep people healthy.

When your child becomes a patient at St. Jude Children’s Research Hospital, you are asked if your child’s blood, tissue, and other bodily fluids may be used for future medical research. This process is called biobanking.

Biobanking is the collection and storage of samples of fluids and tissue donated by people. Samples may include blood, blood stem cells, cerebrospinal fluid, tissue, and urine (pee). Researchers may link samples to patient information such as age, health history, and lifestyle.

St. Jude takes many steps to protect the privacy of this information.

What is the St. Jude Biorepository?

Samples and information are kept in places called biobanks or biorepositories. The St. Jude Biorepository is the biobank at St. Jude.

Biobanks are like libraries of human samples and data. Researchers at St. Jude and around the world request these materials and information to support their research. 

Biobanks have transformed scientific research. They have helped make discoveries to improve the diagnosis, treatment, and prevention of diseases.

Privacy and data protection

Your privacy and the confidentiality of your information are important to us. We protect information in the following ways:

De-identified data
Secure storage
Confidentiality agreements

You have the right to read the Notice of Privacy Practices before you sign it. It may have changed since you first registered at St. Jude. You can find it at the bottom of every page on the St. Jude website.

What sets St. Jude apart

The St. Jude Biorepository started in the 1970s. It was one of the first 5 biorepositories to be accredited by the College of American Pathologists.

More than 95% of St. Jude families take part in the TBANK study, which collects samples for the St. Jude Biorepository. Some families choose not to take part.
It has more than 650,000 samples donated over the last 40 years.
The St. Jude Biorepository supports more than 250 clinical trials worldwide.

Samples from the St. Jude Biorepository have led to many discoveries. These include important discoveries about the basis of childhood cancers and non-malignant conditions by studies such as the:

Choosing biobanking at St. Jude

The choice to donate samples and health information is yours. You may decide not to donate. It will not affect a patient’s treatment.

Patients give samples during routine medical procedures or visits. We may also use “extra” materials from samples collected for routine care and get information from your medical records.

You should not expect to benefit from this research.

Your donated samples and basic health information will be stored in the St. Jude Biorepository until the samples are used up or until you ask us to remove them.

You have the right to leave the project. But we cannot get back samples and information from studies that have already begun. We may use your health information for research forever, unless you tell us to stop.

If your child turns 18 while a St. Jude patient, we will ask them for permission to continue using their saved samples.

Safety in biobanking

Patient safety is our top priority. We have several steps in place to ensure safety. These include:

Trained professionals: Trained medical staff collect samples. They follow strict safety rules.
Ethical oversight: The St. Jude Biorepository is supervised by Institutional Review Boards (IRBs). These boards review and approve all research that uses patient samples to protect patient safety and rights.

Balancing benefits and risks

Benefits of biobanking

Participants help researchers learn more about childhood cancer and other serious illnesses. This knowledge can lead to improved treatments, diagnoses, and care for future patients.

Risks of biobanking

Donating samples has little or no physical risk beyond the risks of the procedure itself.

Although personal information is removed from samples, there is a small risk of the accidental release of private information or unauthorized access to it.

Consent and assent for biobanking

The consent and assent process for the St. Jude Biorepository is designed to ensure that patients and families fully understand what is involved. It makes sure their rights are respected.

Consent (Given by parents or legal guardians)

For children under 18 years old, parents or legal guardians must provide informed consent before samples can be collected. Consent involves:

Detailed explanation: Parents get clear information about the biobank, including how samples will be collected, stored, and used for research.
Voluntary decision: Taking part is optional. Parents and legal guardians can decline or withdraw consent at any time.
Written agreement: Parents sign a consent form to confirm their understanding and agreement.

Assent (Given by the child)

Children are also asked to provide assent. Assent means they agree to take part in biobanking after the process is explained to them in a way they can understand. This explanation includes:

Age-appropriate information: Staff use simple language, pictures, or other tools to explain the biobank’s purpose and the child’s role.
Voluntary participation: The child is told they can say no or change their mind later. Their decision will be respected.
Respect for choice: If the child does not assent, they will not be included in biobanking, even if their parents or guardians gave consent.

The consent and assent process ensures that children and families are informed, empowered, and comfortable with their decision. It reflects our commitment to protecting patient rights and ethically advancing research.

Learn more

If you have questions about biobanking, please contact your primary clinic or doctor.