Biorepositories Core Resource — Frequently asked questions (FAQs)
What are human samples, biospecimens or specimens?
Samples (also called biospecimens or specimens) include materials from your body such as tissue, blood, skin, hair, saliva, and urine.
What is a biobank?
A biobank is a collection of biological samples, such as blood, and health information. Biobanks can be large and hold thousands of samples, or they may be small and hold only a few hundred samples. Different biobanks collect different types of samples and information. The types of information and samples collected depend on the specific purpose of the biobank. For example, some biobanks are specific to a particular disease, such as cancer. Other biobanks are population-based and contain samples and information from people in a specific population or region.
People from all backgrounds and communities can donate samples.
Why should I donate?
Researchers use your samples, along with samples from thousands of other patients, to look for ways to prevent, find, or treat health problems like diabetes, heart disease and cancer. Donating is a way that some patients cope with their disease. It also helps some families cope with the challenge of having a loved one who is sick. Many people find comfort knowing that by donating samples, they will help researchers make discoveries that can advance medicine and improve the treatment of others in their community.
What does it mean to donate tissue and/or blood to UC Davis for research?
If you consent to donate, blood or tissue samples not needed for your diagnosis or treatment will be preserved and made available for biomedical research. Information about you will be kept private by putting a code number on your samples. Researchers may receive information about your condition or treatment but they will not receive any information about who you are unless you consent separately to another study that lets researchers link your identity to your samples.
How do I donate?
There are two ways you can donate a sample:
- You may choose to donate samples that are already being collected during a medical procedure. Often parts of your samples remain after your doctor uses what he or she needs for medical tests. These samples are usually destroyed. But if you give consent, samples that aren’t needed for your medical care and be used for research. You will not need to have any additional procedures for this type of donation.
- Or, you may choose to donate samples through a procedure that is not related to your medical care, such as a blood draw or saliva swab, for research purpose only.
If you are a patient at UC Davis, you may also email the UC Davis Biorepositories Core Resource for more information on donations at UC Davis.
How will my samples be used?
Researchers use donated tissue and blood samples to study what causes health related issues such as cancer and other diseases. Some studies aim to improve the ability to diagnose symptoms to diseases or cancer at the earliest possible stage. Other studies are exploring new and better treatments for patients, or new ways to prevent diseases from occurring in the first place.
What are the benefits of donating my tissue or blood?
Donating tissue or blood samples might not help you directly, but your donation could help make scientific advances for others with your condition in the future. Because your tissue and blood samples are extremely valuable for research, by consenting to donate them, you:
- Ensure that leftover tissue or blood from your treatment will not be thrown out if there is a research study that can use it.
- Join teams of scientists, clinicians, and other experts working to defeat cancer and other diseases as quickly as possible.
Will my treatment change if I agree to donate samples?
No. If you are a patient, your treatment will not change whether you consent to donate samples or not.
Are their costs if I agree to donate samples?
No. There are no costs to you or your insurance if you consent to donate samples.
Will I be paid for donating my samples?
No, you will not be paid or receive and other gifts or rewards. Many donors say they feel a sense of satisfaction by knowing they are helping research. UC Davis is very grateful for your donation and participation—past and present scientific and medical advances depend on patient contributions like yours.
Will anyone make money from using my tissue or blood?
The various biorepositories at UC Davis do not make money from your tissue or blood samples. The costs of managing a biobank are covered through a variety of sources. However, it is possible that a discovery made from studies that use your samples could result in a profit to a company other than our collaborating institutions.
Will I get results from studies that use my tissue or blood samples?
No. Because a code number will be assigned to your samples, it is not possible to provide individual results.
Where can I donate?
As long as you are at least 18 years of age and are a UC Davis patient, you are eligible to donate your sample for research. To speak with someone at UC Davis who can answer your questions about donation or provide you with additional information, please call or email the Biorepositories Core Resource at 916-734-7524.
Do I get to choose how my samples and information are used?
No. Just as you do not get to decide who gets your blood when you donate at a blood drive, you cannot choose how your samples and information will be used in research.
Who can use the samples I donate?
Researchers will use the samples and information you donate. The biobank will not contact you when your samples or information are sent to researchers.
Who decides how my samples will be used?
A committee of experts and patient advocates will review each request for a sample to make sure the proposed research is ethical, useful and based on good science. After the project is approved, the biobank will give researchers samples and related health information.
How long will my samples and information be used?
There is no limit on how long samples and information can be stored and used. Samples can be kept and used in research until the donor asks to have them destroyed or the biobank closes. If the biobank closes, your samples may be destroyed or sent to another biobank.
Can I change my mind?
If you change your mind, contact your doctor to discuss your options. The right to withdraw your samples from research varies by biobank. You should make sure you understand your options before you sign your consent form. Usually, samples and information that have already been given to researchers or used in research will not be returned. Research results from your samples or information cannot be changed or stopped. You may have the right to withdraw your samples and information that have not yet been used in any research. If you have questions about withdrawal of your consent to donate, please email the BCR.
Will I receive the results of research done on my samples?
You will receive the results from your medical tests (such as a biopsy or blood test). But, you will not receive the results from research done on your samples.
Why won’t I receive the results of research done on my samples?
Donated samples are used for broad research and future discoveries, not for discovering information for each patient. Researchers may publish articles about their findings but they will not identify the individuals whose samples were used.
Will donating samples or information learned from my samples change how my doctor and insurance company treat me?
Neither you nor your family will be treated differently after you donate samples. There are measures in place to protect your privacy.
Why do you need information from my health records?
In order to do research with your samples, researchers may need to have some information about you. This information helps researchers learn more about the specific diseases and treatments that they are studying. Information that researchers need may include:
- Your gender
- Your racial or ethnic group
- Your age
- Your family history
- Your medical history
How do I know that my privacy will be protected?
One of the most important things for biobanks is to keep your information private. Biobanks are not allowed to release your personal information without your consent. To protect your privacy, your samples will be coded with a random number instead of your name. Your 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. Federal law requires the protection of your private medical information.
Are there any risks?
There are very few risks to donating your samples for research. The greatest risk is the accidental release of information from your health records. The chances that your information will be released outside the biobank are very small. There are security measures designed to prevent this from happening.
You may be uncomfortable with the fact that the biobank will not contact you before your samples are selected for research studies. If, because of your religious or other beliefs, you would not want your samples to be used for certain types of research, donation may not be right for you.
Your doctor or nurse will prepare you for any physical side affects you may have from having a medical procedure, such as bruising or soreness at the place where your samples are taken.
What if I have more questions about donating a research sample to UC Davis?
What is the UC Davis Biorepositories Core Resource (BCR)?
The UC Davis Biorepositories Core Resource (BCR) is a shared service that develops and delivers educational, operational and research tools for researchers and biobankers who collect, store, or study biospecimens at UC Davis.
What is the UC Davis BCR goal?
The BCR’s goal is to enhance the quality and reproducibility of biospecimen research promoting biobank education and adoption of “best practices” standards for new and existing biobanks at UC Davis.
The BCR will also serve as a cornerstone for continuous development and implementation of enterprise-wide biorepository related infrastructure. This infrastructure will facilitate the ability of UC Davis researchers to procure, process and utilize biospecimens in the most cost as well as time effective manner.
What training will the BCR offer?
- Institutional Review Board (IRB) and Regulatory Compliance policies concerning human biospecimen procurement (integrated with established UC Davis IRB training).
- Overview: Fundamentals of creating biospecimen collection protocols and consent forms.
- Identification of established BCR infrastructure and implementation of available services.
- External web-based biobank and biorepositories specific training programs.
- Customized training to suit need of faculty, staff and/or students (upon request).
- Web Resources (e.g. Biological MTA, Handbook of Human Tissue Sources, ethical best practices).
What education can the BCR offer?
- International Society of Biological and Environmental Repositories (ISBER) guidelines for best practices of biospecimen procurement and storage.
- National Cancer Institute–Biorepositories and Biospecimen Research Branch (BBRB) best practices.
- College of American Pathologists (CAP) Biorepository Accreditation guidelines.
- Internal: Biorepository Core Resource (BCR) services and practices to UC Davis stakeholders.
- External: Community engagement (public/private) sharing UC Davis policies of biospecimen donation and stewardship.
- Federal, state, local and University policies for human biospecimen management.
- Distribution of relevant publications, news and events in the field of biobanking to UC Davis stakeholders.
- Biorepositories Core Resource—“Learn at Lunch” noontime education series
What type of resources/infrastructure will the BCR be developing?
The BCR is developing multiple enterprise-wide tools to assist researchers. Examples:
- BCR website as a centralized biospecimen and biobanking data resource for all UC Davis faculty, staff and students.
- Virtual Biospecimen Database (VBD)—organization-wide biospecimen inventory system. The BCR will develop a Virtual Biospecimen Database (VBD) among established biorepositories and/or biospecimen collections. The VBD is meant to provide a web interface for identifying stored biospecimens across existing UC Davis repositories (retrospective inventory). Investigators and their collaborators will have the ability to identify potential samples and/or create collaborations with existing biobanks or biospecimen collections for their research. The VBD is expected to become a robust conduit allowing UC Davis researchers to participate in internal and external biobanking networks in the future.
- EMR-Computerized Physician Order Entry (CPOE): Use of CPOE allows personnel (e.g. clinician, nurse, CRC) to order research-specific blood (i.e. serum, plasma, whole blood, DNA) via the EMR alone or in conjunction with clinical blood orders. This will leverage use of already established departmental and institutional resources and can reduce duplication of effort for research.
- “Broad Consent” for UC Davis Health members participating in research. Broad consent is one type of consenting approach that allows for an unspecified range of future research studies to be permitted. It is less specific than obtaining consent for each individual research study, but narrower than the open-ended permission with no limitations (i.e., “blanket consent”). The BCR will collaborate with key stakeholders within UC Davis to create a brief standard consent form approach that agrees to a general permit for future research.
Who can request a BCR consultation?
How would I request specimens for my research?
Once the Virtual Biospecimen Database (VBD) is developed and implemented, samples can be located from stored biospecimen inventories across UC Davis. The VBD will identify which biobanks may contain your identified samples. The requestor would contact the established biobanks to further clarify requests and ensure that investigators are in compliance with IRB regulations.
Who is coordinating the BCR?
Dr. Nicholas Anderson is the BCR Director and Stephanie Soares is the Assistant Director (see “About Us” for their biographies). The BCR administrative office is located within the Clinical and Translational Science Center (CTSC, 2921 Stockton Blvd., UC Davis Medical Center).