Your blood is examined to help your doctor take care of you now, but it can also help researchers learn about disease, which might help you in the future.
We know that different groups of people have different chances of getting a disease—this is sometimes due to genetic make–up. So instead of throwing away leftover blood, we can look at the genes in blood combined with anonymous medical information to learn why some groups of people get sick while others don’t. Or why some drugs work really well for some people and not at all for others.
By being a patient at Vanderbilt, you help scientists find better treatments for disease for everyone.
1. What is the Vanderbilt BioVU Program?
We are collecting DNA from adults and children who are patients at Vanderbilt to learn how the differences we inherit can affect health. Learning more about this could help us to improve health care for everyone.
2. What is DNA?
DNA is how people store information we inherit from our parents that directs how we grow and develop. The information is contained in pieces called genes.
3. How does Vanderbilt get DNA from patients?
When blood is drawn from a patient, it is used for the tests that were ordered. DNA can be obtained from the blood that is left over after the tests are done. This blood would normally be thrown away.
4. What will Vanderbilt do with the DNA?
The first thing Vanderbilt will do is to put a code on the DNA and then enter it into a specially protected computer. This computer can then match the DNA 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 in the genes affect health. Researchers may sometimes send the DNA to another Vanderbilt-approved institution or facility for research related services, such as doing a laboratory test to find particular genes in the DNA. De-identified information about genes or a person’s health may also be shared with other researchers.
5. Will anyone be able to tell whose DNA is whose?
NO. No one will know who the DNA belongs to. Vanderbilt researchers, employers, insurance companies and law enforcement agencies will not be able to get information about a specific person's DNA. The purpose of the coding is to make sure that each person's privacy is protected.
6. How does Vanderbilt tell me about this program?
Patients treated at Vanderbilt sign the Vanderbilt Consent for Treatment and Agreement to Pay form. The DNA project is addressed in that form and in brochures and posters located in patient areas. If you have questions, you can call (866) 436-4710.
7. What if I do not want my DNA used this way?
All you have to do is check the box on the form called Consent to Treatment and Agreement to Pay or call (866) 436-4710 to opt out. We would like to collect all leftover blood but recognize that some people will not want their blood used. If you feel this way, you can simply opt out. Your doctors and nurses will not know if you opt out, and you will get the same care either way. After you choose to opt out, our system will remember this preference and will prevent your blood samples from being used for research.
8. Will someone let me know if something different is found in my DNA?
NO. Because we will not know whose DNA is whose, it will be impossible to give any person results about his or her DNA. On the other hand, we hope that learning more about how genes work will help make everyone's health care better, including yours.
9. What other concerns do people sometimes have?
Some people have worried that DNA could be used for cloning. This project does not involve cloning. 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.
10. Who will make sure that Vanderbilt is using the DNA the way they are supposed to?
This project will be watched over by three groups: 1) our research review board; 2) a separate group of scientists, ethicists, and people who manage the medical center; and 3) a group of people from the community.
Please call 866-436-4710 if you have questions.