Your Questions Answered
Introduction Pamphlet (PDF)
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.
How does a biobank make performing research easier?
The biobank serves as a library for researchers. When samples and corresponding medical information are available in one place it greatly reduces the time and resources needed to recruit new participants for each study. By making sample collection and patient recruitment more efficient, better studies can be performed in a more timely fashion.
What kinds of places create and use biobanks?
- Research centers
- Organizations that study specific diseases
Have other biobanks been successful?
Yes. Biobanks are a very important part of performing medical research and have produced many studies with important implications for improving health. For example, studies using samples from different biobanks have allowed researchers to learn more about:
- Safe and effective treatment doses of anti-seizure medications and medicines used to treat heart disease
- Genetic changes that may increase a person's risk of osteoporosis, rheumatoid arthritis, asthma or certain cancers
What type of biobank is Mayo Clinic creating?
Initially, samples and health information will be collected from 20,000 adult patients. Participants will not be selected for the Mayo Clinic Biobank based on any specific factors other than age (all participants must be 18 years or older). Recruitment will start at Mayo Clinic in Rochester, Minn., and eventually expand to all other Mayo Clinic locations (Florida, Arizona and the Mayo Clinic Health System).
Why is Mayo Clinic developing the Biobank?
Mayo Clinic is developing the Biobank to advance clinical research. It is hoped that future research using information from the Biobank will lead to improved health care.
What types of samples will be collected?
A blood sample and medical information will be collected from all participants. Each participant will have 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 will allow 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 will be 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 Rochester and Mayo Clinic community for years, and there are no plans for it to end. Participants will be a part of ongoing health research conducted at Mayo Clinic. Any participant can stop participating at any time.
Participation pamphlet (PDF)
How are participants chosen?
Patients are selected from appointment lists in General Internal Medicine, Primary Care Internal Medicine, Family Medicine, Executive Health and Obstetrics and Gynecology. Recruitment will start at Mayo Clinic Rochester and eventually expand to other Mayo Clinic locations (Florida, Arizona, and the Mayo Health System). Other Mayo Clinic patients (18 years of age or older) may also volunteer for the Biobank, if interested. All participation is voluntary.
Can I volunteer?
Yes, as long as you are 18 years of age and are a Mayo Clinic patient you are eligible to participate. Please call either 507-293-0203 or our toll-free number 1-866-613-2386 to talk with one of our study staff who can answer your questions or provide you with additional information. You may also contact Biobank staff by email to schedule a time to meet with one of our study staff.
Map of subway and street levels
Where do I go to drop off my materials or meet with study staff?
There are two locations at which you can choose to participate. The first location is Desk SL-A in the Baldwin Subway, near Baldwin Desk SL-B. You will see signs for the Mayo Clinic Biobank by Baldwin Desk SL-B.
The other location is Hilton Desk C-A (near Hilton Desk C). To reach that location, you should walk toward Desk C from the Mayo Building then turn left just before you reach Desk C. You will see signs for the Mayo Clinic Biobank after reaching that point.
What can I expect if I choose to meet with study staff?
An appointment with study staff is available for those who would like to learn more about the Biobank or have questions. During the appointment, the staff member will explain the research project, including the risks and benefits, privacy, and confidentiality. You will be given the opportunity to ask questions about your participation in the study. If you decide to participate, the study staff will ensure that you sign the consent form (PDF) and complete a questionnaire (PDF). Then you will be asked to have your blood drawn near where you met with the coordinator (Hilton Desk C or Baldwin Desk SLB).
What if I choose not to meet with study staff?
You may also choose to participate by mailing in your consent form (PDF) and questionnaire (PDF). Study staff will mail you a blood card and your choice of gift items. If you will be at Mayo Clinic, you may also choose to drop off your consent and questionnaire in person at the Baldwin or Hilton desk, have your blood drawn, and receive your gift at that time.
Will there be a cost?
You will not need to pay for tests and procedures done just for the Biobank. The procedure you will need to have to participate in the Biobank is a blood draw. However, you or your health insurance will need to pay for all tests and procedures that you have as part of your medical care.
Will I be paid?
No. However, when you return the completed questionnaire (PDF), you will receive a choice of one or more items worth a total of $20. These items are in recognition of the time you spent giving a blood sample and filling out the questionnaire.
There is a chance that Mayo Clinic may make money from the use of your donated sample. If that happens, you will not be offered a share of the earnings. As a not-for-profit organization, Mayo Clinic uses all profits from products developed at Mayo to support ongoing research and educational activities.
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 will be used for every study. You will be able to get general information about all studies that use the Biobank.
You can find out about the Biobank studies by:
Some of the ways Biobank information will be available to you include the following:
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 decisions about health and disease are very personal, no one can predict which results donors will want in the future. Therefore, we have set up the Biospecimen Trust Oversight Group, which includes members of the community, to help us decide which results may be helpful to donors and how those results may be returned to donors. Names will not be mentioned during this process. It may be necessary to meet with a health care professional to get test results.
Privacy and security questions
Privacy pamphlet (PDF)
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 Clinic cannot control how the samples and information are stored.
How will researchers get access to the Biobank samples and information?
Specimens will not be released to any researcher until the proposed study has undergone a rigorous review and approval process by the following committees:
Who will have access to the samples and information?
Samples and information will be made available to Mayo Clinic staff for approved research studies. Mayo Clinic often works with centers and investigators outside of Mayo on research projects. When you donate to the Biobank, you give Biobank staff permission to share your sample and information with these other researchers, universities and hospitals. Outside researchers can only use your sample or information if a Mayo Clinic investigator takes part in the study proposal. The same approval process is used for all requests for samples for studies inside and outside of Mayo Clinic.
Information provided to researchers will not contain any information commonly used to identify you, such as your name, address or birth date. Health information and samples will be shared only for the following reasons:
- For medical research
- To make sure researchers using the Biobank are following the rules
- To make sure study findings are correct
Will researchers know which sample and information is mine?
Your samples will be given a unique code that very few people will know. No one will be able to identify you just by looking at your sample. For example, Joe Smith will become sample No. 5096739651.
Researchers will not be able to connect the code to your name unless they have been given special access. For example, Biobank staff may need to contact you about your sample or information in order to perform a study. They will try to make sure that no one connects your name to your samples unless it is necessary.
Your medical information will be de-identified before it's given to a researcher. This means that your name, address, Mayo Clinic number, Social Security number and anything else commonly used to identify you will be taken off your health records. So, when a researcher (at Mayo or elsewhere) looks at your medical records, he or she will not be able to tell whose records they are by looking at them.
Although investigators will not have access to information commonly used to identify you, you could be identified through your samples. Your DNA is one of a kind, like your fingerprint. Just like a fingerprint, even if your DNA doesn't have your name attached, people could still use it to identify you. In order to link de-identified DNA to you, a sample of your DNA with your name on it must be available for comparison. Although it is unlikely that this will happen, it is possible. For example, if your DNA is stored somewhere with your name attached and those samples are matched with the samples you donate to Mayo Clinic, you could be identified. Although both Mayo Clinic and its research partners take measures to protect the privacy of research samples, there will always be a chance that you could be identified through your sample.
What will happen 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.