What is the Cedars-Sinai Biobank?
The biobank is a place where biological samples, such as tissue, blood and urine, are stored along with select health information for later use in biomedical research. Researchers use the biobank like a library, accessing samples with diverse genetic characteristics to explore answers to scientific questions. Samples given to the Cedars-Sinai Biobank are provided by patient-volunteers.
What kinds of samples are collected?
With patient consent, Cedars-Sinai stores both leftover blood, body fluid samples and samples that are collected specifically for research. We also store bank leftover tissue that would normally be discarded after a surgery or procedure because it is no longer needed for clinical evaluation.
What happens after a blood or tissue sample is collected?
Your samples will be securely stored in a state-of-the-art alarmed freezer system, so that they are preserved for many years to come until a researcher requests them. A committee is in place to oversee that samples are distributed and used correctly.
Is my health information kept confidential?
Yes. Here’s how: Samples and health information are provided for a variety of studies, including genetic and stem cell research. Your samples and health information are handled under guidelines issued by the Institutional Review Board (IRB), an independent ethics committee. The IRB approves all the operating procedures in the biobank to ensure that your health information is kept confidential – from the collection of your samples to their distribution. Specifically:
- Your samples and health information are anonymized before they leave the biobank. This means that your name, medical record number, etc., are not released with your sample.
- Your name and medical record number are only available to a limited number of authorized staff, who receive and process donations of your samples.
- The biobank complies with the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA), as well as California laws related to the privacy of patient information. A certificate of confidentiality from the National Institutes of Health further protects your privacy.
- Health information is not accessible to insurance companies or employers.
What are the risks?
Despite our robust plan to protect your personal health information before it is released to researchers, there will always be a small potential risk of a breach in confidentiality. There also are small risks associated with every blood draw, such as bruising, bleeding or infection. Donating an additional blood sample for the biobank will not increase these risks, however.
Will I be compensated?
You will not receive any monetary compensation for donating samples. You will not receive any profits from future discoveries associated with your samples. While you may not directly benefit from participating in the biobank, your contribution may advance medicine for future generations.
How do I participate?
When you have a surgery or a procedure at Cedars-Sinai, you will be asked to sign a consent and HIPAA authorization form that clears the way for your leftover tissue and samples to be donated to the biobank. View copies of the consent and HIPAA authorization forms.
By signing the consent form, Cedars-Sinai has permission to:
- Collect an extra blood sample for the biobank during a blood draw performed during a clinical procedure and during future visits to Cedars-Sinai. The blood draws will not exceed a limit of 20 milliliters every other month.
- Collect a urine sample at the time of your blood draw(s).
- Extract non-identifiable information such as your age, ethnicity, type of illness, treatment and test results from your Cedars-Sinai medical records for future research purposes.
- Contact you in the future to update your health information up to 15 years after your last sample donation.
- Store your health information and samples indefinitely in the biobank so researchers may study the long-lasting effects of illness.
- Access samples that were collected in the past and samples that will be obtained during future surgeries or procedures.