Vanderbilt BioVU: Patients Helping Advance Medical Research

As a patient at Vanderbilt, your child can help scientists find better ways to treat or prevent disease.

Here's how: We know different groups of children have different chances of getting a disease. This is sometimes due to each child's genetic make-up. Your child's blood is tested to help the doctor take care of your child. Instead of throwing away leftover blood, we can look at the genes in in the blood, combined with protected medical information, to learn why some groups of children get sick while others don't. Or, why some drugs work really well for some children and not at all for others.

BioVU makes samples left over from routine testing 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, 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 healthcare for everyone.

For the many tests we do at Vanderbilt, samples like blood or tissue are collected to help doctors monitor your child’s 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 contained in medical records here. Researchers will not be able to tell who the information belongs to because BioVU removes information from your child’s medical record that identifies him or her 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 your child 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 whether you’d like your child to participate in BioVU. There are also brochures and posters located in patient areas. If you have questions, you can call (866) 436-4710.

BioVU may share a portion of your child’s sample and health information with other research partners including companies. The information will not link back to your child personally.

We would like to collect all leftover samples, but understand that some people will not want their child to participate. If you feel this way, you can decide to not sign the BioVU consent form for your child. If you agree for your child to participate now and then change your mind later, call (866) 436-4710 and we will record your decision. If you decide your child will not participate, our medical record system will remember this choice and your child’s leftover sample will not be used for BioVU-related research.

Your doctors will not know if your child participates in BioVU. Your child will get the same care whether or not he or she participates.

No. Because BioVU will not know your child’s 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 your child’s.

No. Participation in BioVU is voluntary and patients will not be compensated for donating their leftover sample. Your child’s sample may have commercial value. Future research using your child’s sample may lead to new medicines or products; however, you or your child will not be compensated for donating their sample or for any future research that uses it.

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 of representatives from the community

• 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 leftover samples.
• Others wonder if there is an extra cost. You or your child will not be charged for any research done on your sample.
• Some people are concerned about privacy. BioVU removes information from your child’s medical record that identifies him or her before sharing. Although it is unlikely, it is possible that a researcher could later discover their identity. However, we have taken a number of steps to prevent this.

For more information, call (866) 436-4710 or visit the Vanderbilt Institute for Clinical and Translational Research.