Would You Deposit To 'Biobank'?
Professor Henry T. "Hank" Greely is quoted in a San Jose Mercury News article covering the pros and cons of contributing to a vast genetic 'biobank':
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. But small studies don't work well for the understanding of common and complex disorders such as diabetes, cancer or heart disease, which are believed to be caused by defects in multiple genes, combined with factors such as diet, smoking or pollution.
"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."
Greely estimates that it could cost $1,000 a 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 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 led to litigation. Financing problems have caused the Estonian project to stall.
In such detailed databases, the usual methods for protecting a donor's confidentiality may not work, Greely said. What, he asked, if a life-saving clue is learned? Shouldn't donors be contacted?