Why is MUSC establishing a Sample Bank?
To have samples that can be used for research to help understand and treat diseases. The knowledge gained from the sample bank will allow doctors to better treat diseases such as diabetes, heart disease, kidney disease, cancer, stroke, high blood pressure & lupus.
What is tissue?
Tissue can include materials from your body such as skin, hair, nails, blood, and urine. Samples from organs that are removed as part of your medical care and would otherwise be thrown away may also be used. The MUSC sample bank is currently collecting primarily blood.
How does MUSC get Tissue Samples from patients?
When blood is drawn from a patient, it is used for the tests that were ordered by their physician. The blood that is left over after the tests are done would normally be thrown away, however if patients agree to participate, their leftover tissue samples may be sent to the Sample Bank.
What will MUSC do with the samples?
The first thing that will be done is to put a code on the sample and then enter it into a specially protected computer. This computer can then match the sample with information about the person's health that is contained in the medical records here. Researchers will not be able to tell who the information applies to, but they will be able to study how differences found during study affect health. Information that does not identify a person is all that will be available to researchers along with the sample itself.
Why do people do research with tissue?
Research with tissue can help us prevent and treat diseases such as cancer, diabetes, and Alzheimer’s. By giving your tissue, you could help researchers gain knowledge that may possibly save lives. Your tissue may be used in all types of research, such as finding the causes of disease, developing new tests or new drugs. Your tissue may also be used for genetic research, or research looking at diseases that are passed on in families. This research will help scientists better understand how genes affect health and illness. You do not get to decide what kind of research your tissue is used in, just as you do not get to decide who gets your blood when you donate at a blood drive. You will not profit from any of the products developed from the research. Products are not often developed from just one person’s tissue but instead, they require large numbers of samples from people with diverse backgrounds. However, you will have the reward of knowing you helped researchers find new ways to prevent and treat diseases. When more people contribute to the sample bank, we are more likely to be able to identify better ways to treat complex medical problems.
Will anyone be able to tell whose sample is whose?
NO. No one will know who the samples belongs to. MUSC researchers, employers, insurance companies and law enforcement agencies will not be able to get information about a specific person's sample. The purpose of the coding is to make sure that each person's privacy is protected. The type of code that we apply cannot be used to identify the original patient and no link between the code and the person’s identity is stored.
How is my privacy protected?
To protect your privacy, your tissue will be coded with a random number instead of your name. Your name, address, phone number, Social Security number, date of birth, and anything else that could identify you will be removed before the records are stored in the research program. The researcher will not be able to identify you. In addition to this very secure system to keep your information private, there are methods in place to make sure only approved personnel have access to the tissue bank and records. Personnel cannot release your personal information to you, even if you requested it, because they cannot identify which samples or information belong to you.
How does MUSC tell me about this program?
Patients treated at MUSC sign the Consent for Treatment form during the hospital admission process. This is the form that allows MUSC to treat you. Patients admitted to the hospital sign this form every time they are admitted. Patients seen in the clinics sign it once a year. The Sample Bank is addressed in that form and in brochures located in patient areas. If you do not want to be a part of the sample bank, there is a box to check on the form. If you have questions, you can call (843) 792-8300.
Will someone let me know if something different is found in my tissue?
NO. Because we will not know whose tissue is whose, it will be impossible to give any person results. On the other hand, we hope that learning more about how diseases, genes and treatments work will help make everyone's health care better, including yours.
What other concerns do people sometimes have?
Some people have wondered if it requires taking more blood. It does not require the drawing of any additional blood. Others have wondered if there is an extra cost. You will not have to pay anything extra.
Who will make sure that MUSC is using the tissue samples the way they are supposed to?
This project will be watched over by our research review board as well as a separate group of scientists, ethicists, and people who manage the medical center. Before any scientist can receive samples from the sample bank, they will have to get permission from the research review board (called the Institutional Review Board). This review process is done for all research that involves humans at MUSC. The institutional review board is a group of scientists and administrators as well as people from the community. The job of the institutional review board is to make sure that research involving humans is ethical. The second group to oversee the tissue bank is responsible for making sure that the samples are used wisely. The University’s ethics committee is also available when complex issues arise. In addition, a group of people from the community will periodically give input on how to better serve the needs of the community with the sample bank.