KAI RYSSDAL: The Children’s Hospital of Philadelphia is this country’s oldest kids’ specialist facility. But it’s taking a big step into new technology. The hospital plans to create a database of its patients’ DNA. The goal is to help doctors pin down some of the genetic factors related to disease. But the prospect of the hospital collecting those samples And the uses they might be put to…are raising some concerns. Not least of which is who might profit. From the Marketplace Health Desk at WGBH…Helen Palmer has more.
HELEN PALMER: The Children’s Hospital of Philadelphia — locally known as CHOP — already has DNA samples from many patients. But CHOP’s chief scientific officer Philip Johnson says they plan to spend $40 millon to collect DNA from 100,000 children.
PHILLIP JOHNSON: So that we can understand the genes and genetic pathways that are involved in some of our most common disorders of childhood.
DNA databases are proliferating. The UK has one and the National Institutes of Health is proposing to create one with half a million samples. Kathy Hudson, who directs the genes and Public Policy Center at Johns Hopkins University, says the most important question is who’ll be able to use them.
KATHY HUDSON: We have to make that information in some form widely available to the research community.
They are the people who can craft the cures and prevention strategies. But, Hudson says, we need to be sure databases are private. Philip Johnson says CHOP’s data base will have very tough encryption. But Patricia Roche of Boston University’s health law department says there are some problems with gathering children’s DNA that sound more like science fiction than fact.
PATRICIA ROCHE: Some of that information is information that belongs to the adult the child will become.
Roche says technology’s outpacing both the law and society when it comes to genetics, and the question of who could — or should — benefit financially isn’t clear yet. CHOP’s Philip Johnson says they plan to patent their discoveries. That’s how they’ll get biotech companies to partner with them to create the cures. But anyone who gives their DNA has to sign an informed consent document. So they have the chance to opt out.
In Boston, I’m Helen Palmer for Marketplace.