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Frequently Asked Questions

A biobank is a warehouse that collects, stores, and distributes biological samples from humans to support research studies. These samples, called biospecimens, can include things like tissue, blood, and urine. In addition to the biospecimens, the biobank also collects information about the patient from whom the biospecimen originated. The information could be simple, like age or weight. Or the information could be complex, like medical or medication history. Together, the samples and data in biobanks can be used by researchers to study diseases like cancer, diabetes, and Alzheimer’s. The more samples researchers have to work with, the more accurate and precise their results will be. This research will help to develop new methods to treat and diagnose diseases and maybe even prevent or cure them.

Biospecimens provide a bridge between emerging research findings and patient information. By connecting biospecimens with data, researchers learn more about how disease occurs in people. By identifying patterns in the data, scientists hope to find better strategies to diagnose and treat disease.

Commonly, human biospecimens are used to:

  • Figure out which people are more likely to develop certain diseases
  • Find out how diseases progress and vary
  • Group patients as more or less likely to respond to specific medicines
  • Group patients to determine which medicine or treatment is appropriate
  • Develop screening tests to better detect and treat disease

Any adult (aged 18 years or older) Penn Medicine patient able to give consent may participate. If you are a Penn Medicine patient, you may be approached through your myPennMedicine portal or at your clinical visit to participate.

Consent for the clinical trial only covers being a part of that research project. Researchers also want to learn more about broad questions, such as why you may have gotten a disease. This consent covers that type of research.

Participation is voluntary. The Penn Medicine BioBank will present a consent form for you to read. You will learn about the risks and benefits of taking part. You may contact us with any questions. If you decide to take part, you need to sign a document to indicate you are willing to participate. We request that you donate a blood sample if possible from your clinical visit. If you are having a procedure, we ask your permission to use any tissue not needed for your health care.

Scientists will extract DNA from blood and run molecular assays to generate genetic information from the DNA. Other types of assays may also be done to look at cells, proteins, and biomarkers for disease.

If your doctor asks for blood tests as part of your regular care, one extra tube of blood for the BioBank is collected once at a blood draw at Penn Medicine, at no cost to you. You might see a visit scheduled with Dr. Daniel J. Rader and an “After Visit Summary” on your myPennMedicine account. This is because Dr. Daniel J. Rader is a Penn Medicine doctor connected to the BioBank, who placed the order to collect the one extra tube of blood on behalf of the BioBank.

No. Your genetic information will not be accessible to your employer, insurance provider, or doctor. Your genetic information is protected by a federal law called the Genetic Information Nondiscrimination Act (GINA). GINA protects you from discrimination based on your genetic information. GINA protection covers health insurance companies, group health plans, and most employers. For more information about GINA, you may wish to visit this website

No. There is no cost for taking part in the BioBank.

No. There is no compensation for taking part in the BioBank. Your donation is to help future generations.

In general, you will not receive any results from research conducted on your sample. However, if researchers find a result that would affect your clinical care, you might be contacted about results in the future.

Your sample will be stored and used by researchers without a time limit.

You may withdraw your permission to use your sample at any time. If you would like to withdraw, please contact us at (215) 573-7622 or email If you initially consented through myPennMedicine, we will “expire” your consent document. The document will still be visible to you for your records on your myPennMedicine account, but it will have the word “expired” to indicate that you have been withdrawn from the study.

No. If you take part in the BioBank, you can still participate in other studies or clinical trials. You will be asked to sign a separate consent form for any other research studies.

You may be asked to participate in other studies or clinical trials, based on your participation in the BioBank. Other studies or clinical trials will explain the different benefits and risks before you are enrolled.

Yes, you can participate in the BioBank and choose if you want to participate in other studies. If you do not want to be contacted about other studies, you can call us at (215) 573-7622 or email to let us know.

Your privacy is very important to us and we will make every effort to protect it. Your name, contact information, and date of birth will be removed from your sample and replaced with a code number that only select personnel can access. Personnel with access to your information must sign an agreement to keep your information confidential and secure. It is impossible for us to completely guarantee your privacy. Genomic privacy is a developing concept that will likely require new laws and regulations over time. You should consider the potential impact before deciding whether to participate.

If you selected “No” as your decision on the Penn Medicine BioBank Research Consent form, you are not part of the Penn Medicine BioBank. The signed document may appear for your record on your myPennMedicine account.

Full-time faculty, adjunct faculty, staff, and trainees of the University of Pennsylvania with approved IRB protocols can submit an application to gain access to PMBB data or samples.

Genetic data (genotyping, whole-exome sequencing) are available on a subset of our PMBB participants. Clinical data from the EHR are available for all PMBB participants. Visit our genomic and phenotype data browsers to explore the types of data available.

Yes, PMBB provides Penn researchers access to DNA samples from PMBB participants. Visit the How to Access Data/Samples Page to learn how to access DNA samples.

Yes, PMBB provides Penn researchers access to tissue samples from PMBB participants. Visit the How to Access Data/Samples Page to learn how to access DNA samples.

Access decisions are made on a project-by-project basis, with the following potential considerations: the nature and scope of the project, how much sample is requested, and the impact on Penn Medicine.

Access to data is provided through the PMACS computing environment, via HPC or LPC servers. All users requiring access to data must have PMACS accounts. Once the steps outlined in the How to Access Data/Samples Page are completed and a study team has been granted approval for data, PMBB will grant authorized users with PMACS accounts access to the data via the appropriate server.

Access to PHI is requested the same way other data and samples are requested, following the steps outlined in the How to Access Data/Samples Page . The only additional requirement for PHI access is the HIPAA Waiver Form , to be included with the PMBB application.

Please view our Dissemination Policy to learn how to appropriately acknowledge and cite the PMBB.

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