Now that the BioVU DNA databank has been in place nearly three years for adult patients, program leaders say the time is right to broaden the sample collection group to include children.
“The database will accelerate research for adults, and I think children should have that same benefit of scientific discovery that the adult population has,” says Dr. Louis Muglia, vice chair for research affairs at the Monroe Carell Jr. Children’s Hospital at Vanderbilt.
The BioVU DNA databank takes the small amount of leftover blood from regular laboratory test samples, pulls out the DNA, and stores it in a genetic library. A patient’s records are de-identified, or “scrubbed” clean of identifying information, but the description of medical events is retained and linked with the DNA by an anonymous code.
When BioVU launched in 2007, there were still concerns about including young patients, who often could not speak for themselves, so patients under age 18 were excluded.
“We needed to see how it worked with adults first, to make sure we did it right. This has never been done before with children, so we needed to talk to people about it,” says Dr. Daniel Masys, professor of medicine and chair of biomedical informatics. Masys helped lead the design of the BioVU program, along with Dr. Dan M. Roden, assistant vice chancellor for personalized medicine and professor of medicine and pharmacology.
Parents of pediatric patients, like adult patients, will be given the opportunity to decline their child’s participation, or opt out. Dr. Kyle Brothers, instructor in both pediatrics and at the Center for Biomedical Ethics and Society, has interviewed 60 parents in clinics at Children’s Hospital to find out what they think about allowing their children to be part of BioVU.
“The BioVU concept was posed as a project that wouldn’t help their child, but wouldn’t hurt their child either,” Brothers says. “Nearly 90 percent said they did not have concerns, while 10 percent said they were not interested in their child’s participation.”
About 15,000 pediatric samples will be added to the databank each year. There are some 70,000 adult samples now. The goal is to have approximately 300,000 samples on file to help understand the links between illness and disease and an individual’s genetic code.
© 2013 Vanderbilt University
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