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Charting the gene pool

California firm banks on volunteers to further DNA study


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'Garbage in, garbage out'

Confidentiality assured


elizabeth cohen

ATLANTA, Georgia (CNN) -- While scientists near completion of the mammoth Human Genome Project to map the genetic makeup of the human race, another set of investigators is seeking volunteers to make that information relevant to real people.

But other scientists say the information gathered for DNA Sciences' Gene Trust is too imprecise to hold much value.

CNN's Elizabeth Cohen has more on what the company is trying to accomplish

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DNA Sciences, founded in 1998 to study the genetic bases for diseases and provide information on their results, launched the Gene Trust last year to build a DNA bank -- a database of information about people and their genetics.

Company founder Dr. Hugh Rienhoff says the information is used to advance scientists' understanding of the genetics of disease.

"We're looking at their genes and seeing if the affected people and the unaffected people have different sets of gene variants," Rienhoff said.

Mountain View, California-based DNA Sciences recruits volunteers through its Web site,, where a would-be participant completes a brief survey on his or her health and medical family history. Once the company determines if the volunteer's information would fit into one of its current studies, it dispatches someone to draw blood.

Volunteer Peggy Cox has multiple sclerosis. She joined the project, she says, to help.

"We need more effective treatments and I don't think those treatments will be forthcoming until we know more about the genetics of MS," she said.

'Garbage in, garbage out'

But some geneticists are skeptical. Dr. Stephen Warren, a genetics professor at Emory University in Atlanta, takes issue with the Gene Trust's reliance on its volunteers to report on their own family histories.

"What people know about their own family history is not very precise or accurate," he told CNN. "It's more or less hearsay, or family lore that's been passed down and that's the opposite of what we would like to obtain, which is very precise clinical data."

The results, Warren says, are "essentially garbage in, garbage out."

"Your outcome is only as good as the data you're obtaining," he said.

Rienhoff disagrees, however, saying that people are accurate reporters of their family and personal history.

Confidentiality assured

The DNA Sciences' chairman also says the company has addressed another concern: confidentiality for the volunteers.

"We've taken great pains to provide confidentiality and security to their information and to any genetic information that we generate from their blood," he said.

All of the information, according to DNA Sciences' Web site, is stored in off-line databases and is not accessible via the Internet. Additionally, the site says, the information is coded.

Rienhoff would not tell CNN how many people have given blood to the Gene Trust project since its beginning, but a December 2000 update on the company's Web site says that more than 5,000 people had responded to the Internet recruitment.

As a result of that response, the update said, the company has launched research into several genetic conditions, "including type 2 diabetes, multiple sclerosis, breast cancer and colon cancer."

Rienhoff acknowledges that years of research lie ahead before any substantial findings are confirmed. But that, DNA Sciences maintains, is not only in keeping with the company's mission, but a further reason for launching the Gene Trust.

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4:30pm ET, 4/16

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