What is a biobank?
A biobank is a type of repository that collects, processes, stores, and distributes biospecimens (such as tissue, blood, plasma, and urine) to support future scientific investigation. These biospecimens are frequently annotated with information such as demographic or clinical data about the patient from whom the biospecimen was removed. Biobanks give researchers access to data representing larger numbers of individual people than could be analyzed in previously used systems. Furthermore, samples in biobanks and the data derived from those samples can often be used by multiple researchers. Biobanks are critical to enabling modern molecular-based research (including genomics, proteomics, molecular imaging, etc.) that will drive the development of a new generation of targeted diagnostics and therapies (i.e., personalized medicine) to improve clinical outcomes for patients.
How are biospecimens used in research?
Since the Human Genome was mapped in 2000, scientists have developed many ways to identify genes and their functions, and to learn and alter the role they play in the origin and progression of disease. Other emerging fields of study include proteomics – the study of the full set of proteins encoded by the genome - and pharmacogenomics, which links a patient's genes to their response to drugs and medicines. All of these advances are sometimes categorized as molecular medicine.
In addition to this sort of molecular information, scientists are also analyzing a vast amount of clinical information about patients' health and disease, taken from patient records and clinical trials. This data helps them identify patterns and disease sub-types, and is leading to strategies to diagnose and treat disease in new and more effective ways. Human biospecimens can provide a bridge between emerging molecular information and clinical information. Researchers use specimens to isolate the molecular characteristics of actual human disease, and correlate those patterns with what is known about how that disease is experienced by people (the disease's clinical progression).
Commonly, human biospecimens are used to:
- Identify and validate ways to deliver drugs or agents to specific cells
- Identify how diseases progress and vary
- Group patients as more or less likely to respond to specific drugs
- Group patients to determine which treatment is appropriate
- Develop screening tests to detect biomarkers that are associated with certain stages or sub-types of a disease
Who can participate in the Penn Medicine BioBank?
UPHS patients able to give consent may participate. If you are a UPHS patient, you may be approached at your clinical visit to participate.
What is entailed with participating?
Participation is voluntary. A representative of the Penn Medicine BioBank will meet with you to discuss the BioBank. You will learn about the risks and benefits of participation. Privacy and confidentiality concerns will be discussed. Any questions you may have will be answered. If you decide to participate, you will be asked to sign a document indicating your willingness and to complete a very brief questionnaire. You will be asked to donate a blood sample. If you are having a procedure to remove tissue, we will ask for permission to use the tissue not needed for your health care.
Will my employer, health insurance, or physician be able to access this information?
No. This information is protected under the Genetic Information Nondiscrimination Act (GINA), a federal law which generally makes it illegal for health insurance companies, group health plans, and most employers to request the genetic information we get from this research and discriminate against you based on your genetic information. For more information about GINA, you may wish to visit this website: http://ghr.nlm.nih.gov/spotlight/the-genetic-informationnondiscrimination-act-gina.
Will there be a cost?
No. There is no cost to participating in the BioBank.
Will I be paid?
No. There is no compensation for participating. This is an altruistic donation to help future generations.
Will I receive my test results?
No. You will not receive any results from research conducted on your sample. This is a research study and participation in it will not provide any direct benefit to you.
How long will my sample be stored?
Your sample will be stored and used by researchers indefinitely.
What if I change my mind and want to withdraw?
You may withdraw your permission to use your sample at any time. If you would like to withdraw, please contact us at (215) 349-5027.