Questions and Answers
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.
What types of samples are collected by the Mayo Clinic Biobank?
A blood sample and medical information are collected from all participants. Each participant has the option to permit use of any tissue samples collected and stored from past and future surgeries performed at Mayo Clinic. Having different kinds of samples allows researchers to perform a wide range of studies.
What studies might be done using the Mayo Clinic Biobank?
The goal of the Biobank is to provide samples for different types of studies. Many of the studies are aimed at gaining a better understanding of how a person's genes (DNA) may influence overall health and wellness.
For example, some studies will focus on identifying genetic changes that might affect cancer risk. Other studies may focus on how differences in DNA influence patients' responses to certain medicines.
If researchers gain a deeper understanding about the relationship between genes and disease, it is hoped that physicians may be better able to tailor medical evaluations, recommendations and treatment plans for their patients in the future.
How long will Mayo Clinic use the Mayo Clinic Biobank?
The Biobank is a resource meant to serve the research community for years, and there are no plans for it to end. Participants are a part of ongoing health research conducted at Mayo Clinic.
What is expected of me when I join the Mayo Clinic Biobank?
Find more information about participating in the Mayo Clinic Biobank
How are participants chosen?
Patients are selected from appointment lists in numerous Mayo Clinic specialty areas, including general internal medicine, primary care internal medicine, family medicine, executive health, and obstetrics and gynecology.
Recruitment is taking place at Mayo Clinic's campus in Rochester, Minnesota, Mayo Clinic's campus in Jacksonville, Florida, and in the Mayo Clinic Health System.
Mayo Clinic patients who are 18 years of age or older may also volunteer for the Biobank, if interested. All participation is voluntary.
Will the Mayo Clinic Biobank be expanded to recruit patients at Mayo Clinic's campus in Arizona?
There are currently no plans to expand recruitment to Mayo Clinic patients in Arizona. However, there is a related biobank called the Sangre Por Salud Biobank. The Sangre Por Salud Biobank recruits patients from Mountain Park Health Center, which serves a large Latino community in the Phoenix area.
While this Biobank supports all types of medical studies, there is emphasis on studies in obesity, metabolism and diabetes, all areas of special concern in the Latino population.
How can I enroll in the Mayo Clinic Biobank?
The Mayo Clinic Biobank has reached its goal of enrolling more than 50,000 participants and is no longer recruiting new participants.
Can I find out how my sample is being used?
No. You will not be told exactly which studies are using your samples and information. Not all participants' samples are used for every study. You are able to get general information about all studies that use the Biobank.
You can find out about Biobank studies by:
You can decide to stop receiving this information at any time.
Will I find out if researchers discover anything about my health?
Many studies will be performed using samples from the Biobank. During individual studies, researchers could find out important information about your health.
They might discover something about your health right now or about your risk of getting sick in the future. Researchers will not discover something about every donor, so you are not guaranteed to receive results.
Since our medical knowledge is constantly expanding, we have set up a process to help us decide which results may be returned.
- Research studies are reviewed by a panel of experts who decide whether the results should be offered to participants.
- If it is determined that the results should be returned, participants (both those with positive and negative results) are mailed a letter that briefly outlines the research study. The participant can either:
- Do nothing.
- Contact the Mayo Clinic Biobank to find out more about the research study. If the participant wants to find out more, he or she will be scheduled to talk to a genetic counselor over the phone. No results will be disclosed during the first conversation. If the participant wants to continue, he or she can set up a second phone call to receive his or her personal results.
- Receiving a letter does not mean that you have tested positive for a condition.
- The opportunity to receive results will be offered for only one year. This is because medical science is constantly changing and the results can quickly become outdated.
- This procedure may change as scientific knowledge continues to grow and evolve.
Privacy and security questions
How are the samples and information stored?
At Mayo Clinic, the Biobank samples are secured in locked freezers, and access to them is limited. The building is under constant video surveillance. Personal medical information is stored in computers that are protected by electronic security measures.
If samples and information leave Mayo Clinic, then Mayo cannot control how the samples and information are stored.
Who uses the samples and data from the Mayo Clinic Biobank?
Researchers from within Mayo Clinic and from other research institutions across the world are the primary users of the samples and data from the Mayo Clinic Biobank. Samples and data are also available to commercial organizations, such as pharmaceutical companies.
However, before materials are shared with commercial organizations, each request must pass high levels of scrutiny to ensure that the project is of high quality, has the potential to benefit Mayo Clinic patients now or in the future, and meets all legal and contractual requirements.
Specimens are not released to any researcher until the proposed study has undergone a rigorous review and approval process by these committees:
- An Institutional Review Board (IRB), which ensures that all projects are ethical and appropriate.
- The Mayo Clinic Biospecimen Subcommittee of the IRB, which ensures that only the necessary amount of specimen is collected and used and that all specimens are used only for research that has been approved by the IRB.
- The Mayo Clinic Biobank Access Committee consisting of Mayo Clinic physicians and scientists, which reviews each request for specimens and medical information to ensure that it is both appropriate and scientifically valuable. Community members from the Community Advisory Board may be called upon by the Biobank Access Committee when necessary.
Find out more about Biobank governance and oversight or the Mayo Clinic IRB.
What happens to my samples and information when I die?
Once you die, your sample will be considered a gift to Mayo Clinic. That means Mayo Clinic can continue using it in the ways described in the consent form forever, even if your family wishes that you had not donated a sample to the Biobank.
Since your samples contain your genetic information, your family may want access to them after you die. On the consent form, you can choose whether you would like to allow your next of kin access to your sample after you die.