http://detnews.com/2001/health/0104/25/h02-216801.htm

Wednesday, April 25, 2001
By Rita Rubin / USA TODAY

On the Internet, you can pay bills, rack up more bills or hunt for a new house. And now you can add another web-based task: volunteer your DNA for the good of science.
 
In recent months, at least three web sites have begun seeking blood or saliva for DNA analysis.
 
Proponents say it's the only way to recruit the thousands of individuals needed to identify subtle variations in DNA that might increase one's susceptibility to a disease. Toward that goal, they want to compare DNA from people with a disease to DNA from people who don't have it. By identifying differences, they hope to develop new drugs or diagnostic tests.
 
Like any web-based enterprise, these sites raise privacy concerns, although their backers say they have gone to great lengths to protect identities. The privacy issue aside, skeptics question whether studying subjects recruited willy-nilly through the Internet will ever lead to useful discoveries.
 
Although its web site has been up since last summer, Brussels-based spitters.com is "still sorting out some things on the privacy thing," spokeswoman Catherine van Gerven says. Still, she says, the site has attracted saliva samples from a few thousand web surfers.
 
Up until now, DNAPrint Genomics, which is looking for genetic variations that might affect how people react to medications, has collected blood samples only at Florida blood donation centers and doctors' offices, says Tony Frudakis, head of the Sarasota company.
 
At the urging of participating physicians, Frudakis' company has placed its informed-consent form and medical questionnaire online. Out-of-state residents can request a saliva collection kit.
 
The most publicized site, DNA Sciences' Gene Trust, has registered 7,500 people in the United States since its launch last summer, says Hugh Reinhoff, founder and head of DNA Sciences in Mountain View, Calif.
 
Those volunteers have completed one or two surveys about their health and medical history and have been deemed of interest to DNA Sciences, which is focusing on breast cancer, colon cancer, multiple sclerosis and adult-onset diabetes. The next step: a visit by a phlebotomist to draw blood.
 
Joseph Terwilliger of Columbia University's Genome Center likens seeking significant variations in randomly collected DNA to looking for a needle in a stack of needles.
 
One problem, Terwilliger says: Medical information supplied by volunteers recruited online is unlikely to be accurate -- a problem when the point of the research is to find disease-related genetic variations.
 
Of even greater concern, he says, is an overemphasis on the role of genes in disease, which is often weak at best.