Wanted: Your genes.






The push comes from National Human Genome Research Institute director Francis S. Collins, who led the government's project to sequence the human genome.




"It is an excellent project. I hope that we can convince the public of the importance of study like this," said David Haussler, director of the Center for Biomolecular Science and Engineering at the University of California, Santa Cruz. Haussler played a crucial role in the international Human Genome Project and has discussed "biobank" data analysis with federal scientists.

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.


So scientists need to study many people to make meaningful discoveries.

"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."



Participants probably would not be paid, so they would be asked to donate out of civic duty. And given the slow pace of science, there's no guarantee their contribution will lead to an improvement in their own lives.

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.




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?

"Biobanks put important new wrinkles on concerns about privacy, genetic discrimination and benefit-sharing," said Marcy Darnovsky of the Center for Genetics and Society in Oakland. "These are complex issues that could wind up hurting people rather than helping them, if the biobank isn't done right."