Too Much Information

It is up to each lab to decide whether a test is sufficiently accurate and clinically valid, Javitt said. There is no independent review, which makes it difficult for consumers to know whether a test is meaningful. Assessing a lab's proficiency is also a black box for consumers, Javitt said.

Even if a test is credible and the lab proficient, experts question the benefit of testing for conditions about which patients can do very little, such as Alzheimer's disease.

Genetic counselor Elissa R. Levin, clinical director of DNA Direct, said her firm has taken steps to address such concerns. Officials at the company, launched last year by a California entrepreneur, declined to disclose how many clients have been tested or other details it deems proprietary.

The firm, whose motto is "your genes in context," offers testing for about a dozen conditions or diseases, with prices ranging from $199 for hereditary hemochromatosis, a surfeit of iron in the blood that can cause liver disorders and cancer, to $3,300 for tests for the BRCA genes associated with breast and ovarian cancer. DNA Direct does not offer Alzheimer's testing.

All tests ordered online by consumers must be approved by a medical geneticist, said Levin. Phone counseling before and after testing is required for infertility and breast cancer testing; others can reach a counselor by phone if they choose.

Before receiving a test kit, users complete an online risk quiz, which Levin said helps ensure a consumer is receiving the proper test. DNA samples are analyzed by large commercial labs -- LabCorp or Myriad Genetics -- and users receive their results online within a month, along with recommendations about follow-up and a letter to give their physician and family members.

"The traditional mode of genetic services is not for everyone," said Levin, who previously worked as a genetic counselor at the University of California, San Francisco (UCSF). DNA Direct, she said, fills an unmet need for services and allows people who don't live in major metropolitan areas to be tested quickly and privately.

Privacy was the paramount concern of Carol Jordan, 51, a Georgia bookkeeper. Jordan said she already knew she had hemochromatosis, but was not sure whether it was hereditary. If so, she didn't want it on her medical record, because she'd already been turned down for additional life insurance.

A DNA Direct test revealed she had the genes, which Jordan described as "both a shock and a relief," because it explained the severity of her symptoms at an early age, which included high blood pressure caused by elevated iron levels. The results mean her 25-year-old daughter may well be at increased risk and will need to be monitored closely.

Jordan is among the one-third of DNA Direct customers found to carry a genetic mutation, according to Levin. That number is substantially higher than the 5 to 10 percent seen in genetics clinics such as UCSF's, Levin said. So far, she said, there have been no problems with patients falling apart when they get their results.

The DNA Direct experience "is not significantly different than going to a genetics center," Levin said.

Jill Fonda disagrees. A veteran genetic counselor in Montgomery County who works in a high-risk obstetrics practice, Fonda previously counseled patients at Children's Hospital.

Fonda said she is concerned about the way DNA Direct describes the risk of cystic fibrosis (CF), a lung disorder, and promotes home testing for it.

The company's Web site says that as many as one in 25 Americans is a carrier of the CF gene. Adults with infertility or chronic sinus infections, as well as children with unexplained growth or digestive problems, might be candidates for testing, it says.

"You see 'one in 25,' and that sounds really high," said Fonda, "but what I don't see here is that each parent must pass on a defective gene for a child to have CF." (According to the National Heart, Lung, and Blood Institute, one in 3,000 babies born in the United States has CF and 30,000 Americans are estimated to have the disorder.)

That information appears midway through a long section on the DNA Direct Web site and is easily missed, Fonda said. Much of the information on the site, she added, is too technical and hard to understand.

Levin disagreed. "I think the information we provide is absolutely adequate and accurate," she said. "Everybody uses the Web differently. I'm very comfortable with the fact that all the information is there and that people are adequately understanding" it.

Fonda is dubious. "People don't read stuff, and most of them won't read that far," she said. "I don't think it's the right context for this."

Resources

Sources of consumer information on genetic testing include:

· The National Human Genome Research Institute: http://genome.gov/ . Call 301-402-0911.

· The National Society of Genetic Counselors, whose Web site contains a locator for counselors: http://www.nsgc.org . Call 312-321-6834 or e-mail questions to fyi@nsgc.org .

· The Genetic Alliance, a nonprofit Washington-based coalition: http://www.geneticalliance.org/ . Call 202-966-5557 or e-mail info@geneticalliance.org .

Join Gail H. Javitt of the Berman Bioethics Institute of Johns Hopkins University for a Live Online chat about genetic testing, today at 2 p.m. at www.washingtonpost.com.

Comments: boodmans@washpost.com.