Tissue Donor FAQ
Where Does the Tissue Come From?
Patients who will be having surgery to remove tissue may be asked to donate a portion of the leftover tissue. Whenever a biopsy or surgery is performed, the tissue that is removed is examined by a pathologist to determine the nature of the disease and to assist with diagnosis and treatment. This tissue will always be used first to help make decisions about your care. After all tests have been done, there is usually some leftover tissue that is not needed. You can choose to have this leftover tissue donated to the Tissue Bank for use in future research. People who are trained to handle this tissue and protect your rights as a donor make sure that the highest standards are followed by the Penn State Cancer Institute (PSHCI) Biorepository. Your doctor has agreed to help collect tissue from many patients. Doctors across the country are helping in the same way. Your doctor will only take the tissue needed for your care during surgery.
Why Do Researchers Need to Use Tissue?
Research with tissue can help us to find out more about what causes cancer, how to prevent it, and how to treat it. It also can answer many other health questions. Some of these include finding the causes of diabetes and heart disease or finding a genetic link to Alzheimer's. Links between blood and diseases may be found, which can help doctors provide earlier treatments and increase a patient's survival rate. Researchers also find it helpful to compare environmental exposures (for example, exposure to tobacco, dietary habits, occupational exposures, etc.) experienced by tissue donors with different diseases.
What Type of Research is Done With Tissue?
Many different kinds of research use tissue. Some researchers may develop new tests to diagnose diseases. Others may develop drugs or new methods to treat or even cure diseases. Some researchers look at diseases that are passed on in families. This is called genetic research. These researchers may look for genetic causes and signs of disease.
How Do Researchers Get Tissue?
Researchers from universities, hospitals, and other health organizations conduct research using tissue and blood. They contact the PSHCI Biorepository and request samples for their studies. The PSHCI Biorepository reviews the way that these studies will be done and decides if any of the samples can be used. The PSHCI Biorepository will then send samples and related data to the researcher. The PSHCI Biorepository will never send your name, address, phone number, social security number, or any other identifying information to the researcher.
Will I Find Out the Results of the Research Using My Tissue?
No, you will not receive the results of research done with your tissue. Research can take a long time and must use tissue samples from many people before results are known. These results may not be ready for many years and will not affect your care right now, but they may be helpful to people like you in the future. Though research involves the test results of many different people, your biopsy result involves only you. Your doctor will give you the results of your biopsy when they are known. These results are ready in a short time and will be used to make decisions about your care.
Will I Benefit From the Research Using My Tissue?
There will be no direct benefit to you because your tissue may not be used for some time after you donate it, and because research can take a long time to complete. However, it is hoped that the results of research on your tissue and the tissue from other patients like you will provide information that may help others in the future. Your tissue may be helpful whether or not you have cancer.
So, What Do You Need From Me?
If you agree to participate in this research, the following procedure will be followed:
- A portion of your leftover tissue will be transferred to the Tissue Bank
- Approximately two teaspoons of blood will be collected
- You will be asked to complete a questionnaire about your background and environment. This questionnaire will be used to compile statistical data about certain diseases and compare what, if anything, these diseases may have in common.
- Information about your medical condition (diagnosis, treatment, disease status, pathology report, tumor registry) will be anonymously recorded from your medical record
Will My Name Be Attached to the Records or Tissue That is Given to the Researcher?
No. Your name, address, phone number, medical record number, social security number, and anything else that could identify you will be removed from your tissue, blood, and information before they go to the researcher. Only a barcode will remain.
Why is the Information From My Health Records Needed?
In order to do research with your tissue, researchers may need to know some things about you. For example: Are you male or female? What is your race or ethnic group? How old are you? Have you ever smoked? This type of information helps researchers answer questions about diseases. The information that will be given to the researcher includes your age, gender, race, diagnosis, treatments, and possibly some family history. The information is collected by the PSHCI Biorepository from your health record and from the questionnaire that you fill out. This information will not contain your name or other identifying details.
How am I Protected From Harm?
The PSHCI Biorepository is in charge of making sure that your information is kept private and that steps are taken to prevent the misuse of records. Your name, address, phone number, medical record number, social security number, and other identifying information will be taken off anything associated with your tissue before it is given to a researcher. This makes it extremely difficult for any research results to be linked to you or your family. Also, people outside the research process will not have access to results about any one person, which will help to protect your privacy.
Is There Anyone Who Makes Sure That the Research Done on My Tissue is Ethical?
All research using human tissue is reviewed and approved by an Institutional Review Board (IRB). You can find out additional information about the IRB by visiting the Institutional Review Board and Human Subjects Protection Office Website of the Penn State University and College of Medicine.
How Could the Records Be Used in Ways That Might Be Harmful to Me?
Sometimes, health records have been used against patients and their families. For example, insurance companies may deny a patient insurance coverage or employers may not hire someone with a certain illness (such as AIDS or cancer.) The results of genetic research may not apply only to you, but to your family members. For diseases caused by gene changes, the information in one person's health record could be used against family members. However, you are protected in this study by the barcode and anonymity of your tissue.
Will I Receive Payment to Participate?
There is no payment for tissue donation.
What If I Have Other Questions About Donating Tissue?
Please contact Molly Pells at 717-531-5794; she is the Biorepository Coordinator.