Frequently Asked Questions about BioVU
BioVU is one of many research programs at Vanderbilt. BioVU uses samples left over from routine testing and makes them available for research. Researchers can learn how differences in these samples, such as DNA, or certain health information may affect health. DNA is the information in a person’s body that is inherited from his or her parents that directs how the person grows and develops. The information is held in pieces called genes.
Learning more about this could help us improve health care for everyone.
For the many tests we do at Vanderbilt, samples like blood or tissue are collected to help doctors monitor your health. After all testing is finished, there is often a leftover portion that is not used and it is normally thrown away. If you agree to participate, BioVU will save the leftover sample for research.
The first thing Vanderbilt will do is to put a code on the leftover sample and then enter it into a specially protected computer. This computer can then match the leftover sample with information about the person’s health that is contained in medical records here. Researchers will not be able to tell who the information belongs to because BioVU removes information from your medical record that identifies you before sharing. Researchers sometimes send parts of the leftover samples or health information to research partners (Vanderbilt-approved institution, facility, or companies) for research-related services or projects. The information shared will not link back to you personally (this is called “de-identified”), so no one knows who the health information belongs to.
NO. Vanderbilt researchers, insurance companies, employers, and law enforcement agencies will not be able to get information about a specific person’s leftover sample or health history from BioVU.
Patients treated at Vanderbilt sign the BioVU consent form. This form gives you a choice about participating in BioVU. There are also brochures and posters located in patient areas. If you have questions, you can call 866-436-4710.
We would like to collect all leftover samples, but understand that some people will not want to participate. If you feel this way, you can decide to not sign the BioVU consent form. If you agree to participate now and then change your mind later, call 866-436-4710 and we will record your decision. If you decide to not participate, our medical record system will remember this choice and your leftover sample will not be used for BioVU-related research.
Your doctors will not know if you participate in BioVU. You will get the same care whether or not you participate.
No. Because BioVU will not know your identity, it will be impossible to give you results. On the other hand, we hope that learning more about how genes work will help make everyone’s health care better, including yours.
BioVU may share a portion of your sample and your health information with other research partners including companies. The information will not link back to you personally.
No. Participation in BioVU is voluntary and patients will not be compensated for donating their leftover sample. Your sample may have commercial value. Future research using your sample may lead to new medicines or products; however, you will not be compensated for donating your sample or for any future research that uses it.
Some people worry that DNA from blood or tissue could be used for cloning. This project does not involve cloning.
Some people wonder if participating in BioVU means taking more blood or tissue. It does not require donating additional samples. BioVU only makes use of left over samples.
Others wonder if there is an extra cost. You will not be charged for any research done on your sample.
Some people are concerned about privacy. BioVU removes information from your medical record that identifies you before sharing. Although it is unlikely, it is possible that a researcher could later discover your identity. However, we have taken a number of steps to prevent this
This project will be watched over by three groups:
- Our research review board
- A separate group of scientists, ethicists, and people who work at the medical center
- A group from the community