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DNA Test Could Provide Early Warning Of Disease Risk

Physician Skeptical About Public's Understanding Of Genetic Test Results

POSTED: 3:02 pm CDT July 21, 2005
UPDATED: 11:20 am CDT July 25, 2005

Tens of thousands of people in Missouri and Kansas will be diagnosed with some form of cancer this year alone. But as Kelly Eckerman discovered a simple test could tell you whether you're at high risk.

An Internet-based company claims that knowing about your genes could help you stay healthy, and its researchers have developed a way to test your genetic makeup from the privacy of your own home. The company, DNADirect.com, provides a personal genetic testing kit to clients, then tests their results before offering a risk profile.

Company founder and chief executive Ryan Phelan said almost everyone who has used the DNADirect.com test has "a personal or family history with a specific medical issue." Phelan said the company's tests show whether someone is prone to breast and ovarian cancers, blood clotting disorders and other illnesses, such as cystic fibrosis.

"A genetic test can help them identify that, and then they can do something about it," Phelan said.

Cancer survivor Gay Jenson has survived cervical cancer twice. She said she recently developed a cancerous growth in her breast and wants her daughter to be tested.

"It was to the point where if we hadn't caught it, and gotten it out through surgery, it was getting ready to erupt into cancer," Jenson said.

Jenson's daughter, Danielle Arterburn, said she fears that she could have a good chance of developing the disease.

"I tell myself sometimes that if I did have cancer, I wouldn't want to know because seeing what she went through and knowing the obsession of, 'Is it gone yet, is it gone yet? Am I going to die? When am I going to die?'" Arterburn said.

Phelan said that knowing she is predisposed to the danger of breast cancer can help Arterburn prevent it. Phelan said the company mails clients a test kit package with a cheek swab that is used to take a sample.

"People basically take the cheek swab (and) do a scraping of the inside of the cheek," Phelan said. "They literally put it back in (the package) -- they have a label they stick on with their personal identifier -- they put it back in FedEx and send it off to us."

The company e-mails confidential test results in about a week. Phelan said clients receive a personalized report complete with a genetic risk assessment, what it means and what action is recommended.

"We really walk them through the steps that they can take to really be a much smarter health care consumer," Phelan said.

Although the tests are generally accepted as a good indicator for disease risk, some physicians worry that most people won't understand the results.

Dr. John Mulvihill, the director of the Human Genetics Program at the University of Oklahoma Medical Center, said he has no doubt that the tests are correct. But the interpretation of those tests worries him.

"There's frankly some level of skepticism," Mulvihill said. "I just am concerned about the effectiveness of it, and will it really be understood. Will one word -- hereditary -- be misunderstood?"

Phelan doesn't think so. Phelan said the company takes extra steps to help people understand the test results and what they mean, and added that the company has "board-certified genetic counselors" on staff to answer questions by phone.

"At our company, DNADirect.com, we go to great lengths to ensure that people really do understand the importance of the information that they're getting," Phelan said.

Jenson and Arterburn have their own concerns about the test. Arterburn said she would rather face an actual doctor who offered her feedback on her risk level for certain diseases.

"I would just feel more comfortable, myself, being one-on-one with a person in the same room -- just because it makes me feel more comfortable," Arterburn said.

Jenson said she agrees. She said the test would be fine as long as a physician has a chance to review the results.

"I would want her to get as much information (as possible) that is at her disposal -- but I would want her to have that backed by her physician," Jenson said.

According to Phelan, DNADirect.com does not discourage clients talking with their doctors, but the company does encourage people to learn more about their genetic makeup first.

Tests at DNADirect.com can cost anywhere from $200 to $3,000. In some cases, insurance will cover the test.

The cancer test costs the most and requires a blood test instead of a cheek swab. Those tests can also be performed for a fee at some hospitals, and the cost is about the same.

Phelan said privacy is a big reason why many people choose to test with DNADirect.com. Phelan said many customers choose to test with the company to keep the information off their insurance until they're ready to share it with their health-care providers.


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