If you’ve received a brochure in the mail prior to your health care appointment, your doctor’s office at Penn State Health is part of the Institute for Personalized Medicine biorepository consent process. During your visit, a member of our team may approach you and talk about your potential involvement in the program: developing a resource for Penn State Hershey scientists – and your doctors. You may ask our team member any questions you may have before agreeing to participate.

When you participate, you are agreeing to donate extra blood when you are already having blood drawn during your care, and, if you have surgery or a medical procedure, donate leftover tissue, fluid, or cells that would otherwise be discarded. These donations will be used by our scientists to study not only health problems that you may be being treated for, but also other disorders and normal health processes. It does not require any additional procedures or visits from you.

You do not have to participate, and you may withdraw at any time if you decide to after donation.

You can contribute to the future of medicine with us. Your participation in our biorepository could improve healthcare for you, your children, your grandchildren, and your family members in the coming years.

By donating specimens for our biorepository, you will help Penn State physicians and scientists conduct the necessary research that will translate current scientific discoveries into patient care.

This will take time, effort and substantial financial resources. However, we are committed to making this investment in personalized medicine because we believe it will eventually benefit our patients.

While you may not benefit immediately, our goal is to use the findings from the research we do today to shape health care in the future.

Patients who are scheduled for a healthcare appointment at Penn State Health's practices may be mailed a brochure describing the opportunity to participate in the Institute for Personalized Medicine’s effort to collect medical samples. During your doctor visit, you may be approached by an Institute staff member who will discuss the program with you and answer any of your questions.

You may also call 855-369-3540 (toll free) or email [email protected] to learn more about participating.

Participation is completely voluntary. No matter what you decide, now or in the future, it will not affect any aspect of your health care or relationship with Penn State Health. You may quit at any time if you participate.

Agree to donate samples from your current health care. A full explanation of participation will be presented by a staff member during the process of agreeing to donate samples (called consent).

These samples include:

• Extra blood (up to two tablespoons) when you are already having blood drawn for your care, and, if you have surgery or a medical procedure, leftover tissue, fluid, or cells (called “samples”) that would otherwise be discarded during the course of your care.
• Additional health information not always collected during your care, such as your smoking history, race, and family’s health history.
• Saliva, which can be used in place of blood for certain research needs, such as studying DNA, your genetic material.

• Allow the collection of the samples and information described above.
• Allow your protected health information (PHI) to be matched with your samples for processing and tracking.
• Allow your de-identified health information to be matched with your de-identified samples for research.

A biorepository (also called a bio-bank) is a collection of blood samples, tissues and other biological materials donated by patients, coupled with information about their health, environment, lifestyle, medical care and responses to medical treatment. The two main parts of the Institute for Personalized Medicine Biorepository are the blood and tissue samples, and a database of information obtained from the participants’ care.

The IPM Biorepository treats the samples and information with the utmost care and highest security. The samples are stored in small tubes in ultra-cold freezers to preserve them for many years. The tubes are labeled with coded numbers or barcodes, and the freezers are located in secure rooms. Health, environmental and lifestyle information about those patients who have donated their samples to the IPM Biorepository are stored in sophisticated computers within highly secure networks. The security is so stringent that no breach of information or samples from a bio-bank has ever occurred.

There are two ways information is used. First, your sample is matched to your protected health information for processing and tracking. This information is protected like all of your health information at Penn State Health, following federal privacy laws.

When scientists use your donation and health information, any identifying information is removed and can not be traced to you. The scientists know the demographic and health information associated with a specimen, but does not have access to the information to identify you personally.

This information is not shared with any other parties including insurance companies.