Scientists Seek Next Step With National 'Biobank'
Professor Henry T. "Hank" Greely is quoted in this Inside Bay Area story about banking genes in a "Biobank" for future use in research of serious illnesses:
Since the historic sequencing of the human genome in 2000, scientists have been seeking the next step, said Stanford University bioethicist Hank Greely. "We've hit a bit of a brick wall," he said.
Small DNA studies prove that a single gene, when mutated, can trigger rare inherited disorders such as Huntington's disease, Greely and Haussler said.
"In a lot of diseases, we know there's a genetic connection but we're having a hell of a time trying to figure out what it is," Greely said. "It is hoped that big biobanks, by collecting hundreds of thousands of specimens, can tease out the small effects."
The price is steep. Greely estimates it could cost $1,000 per person to interview and then sample, store and analyze their DNA. "There is not that kind of money lying around right now," he said.
A cheaper alternative, he said, would be for the nation's many smaller databases, such as that held by the U.S. Department of Veterans Affairs, to be opened up and made available for widespread study.
Similarly ambitious efforts have hit snags, Greely said. In Iceland, a planned database of the entire population by a private company, deCODE, led to litigation. Financing problems have caused the Estonian project to stall.
In such richly detailed databases, the usual methods for protecting a donor's confidentiality may not work, Greely said. And he asked: What if a life-saving clue is learned — shouldn't donors be contacted?