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Panelists tackle issue of genetics testing

by ashley wiehle, the southern

Thursday, June 28, 2007 7:18 AM CDT

CARBONDALE - If you had genes commonly associated with an increased risk of breast cancer, would you want to know?

And if you found out you had the gene, responsible for 5 to 10 percent of known breast cancer cases, would you live in nervous anticipation of a time bomb that may never go off?

With genetics testing advancing rapidly, it's a quandary that is more than hypothetical.

Panelists will focus on genetics testing during a panel discussion titled "What Would You Do? Genetic Testing and Life Decisions" at 7 p.m. today at Kleinau Theatre at Southern Illinois University Carbondale's Communications building.

The event will feature excerpts from "In the Family," a Joanna Rudnick documentary exploring genetic testing for heredity breast and ovarian cancer.

Breast cancer will be a major focus of the discussion. Scientists have discovered the BRCA1 and BRCA2 genes, which can increase the likelihood a woman will develop breast cancer by three to seven times, according to the National Cancer Institute.

However, presence of the gene does not always indicate that a woman will get breast cancer. Therein lies some of the difficulty with genetics testing.

Vickie Devenport, outreach coordinator for event cosponsor WSIU, said the panel will focus on the ethical aspects of genetics testing.

"There are questions that come about because of whether you want to be tested or not," Devenport said. "Whether you have this gene doesn't necessarily mean you are going to get cancer. There are a lot of issues.

"The question we are looking at is whether you want to know as an individual."

Panelists will include Dr. Sharon Hull, associate professor and interim chair of the Department of Medical Humanities at the SIU School of Medicine; Rudnick, director of development for Kartemquin Films; and Marilyn Twitty, genetics clinic coordinator for the Jackson County Health Department.

Twitty's clinic does genetic testing on area residents who have been referred by their doctors. People with a family history of known genetic disorders often request testing.

Children can be tested for genetic disorders if their teachers believe they are progressing at an abnormally slow rate.

"We've had development teachers refer because the children are delayed," Twitty said.

Even knowing that someone carries a gene such as breast cancer can be emotionally distressing for the patient.

"Some people are scared if they find out (they have the gene) because they think they might have both breasts removed," Twitty said.

Variables like insurance coverage have entered the debate as well.

"Insurance is denying some people if they're found to have BRCA1 and BRCA2," Twitty said. "It puts them at risk for developing breast cancer, but it doesn't mean they will have breast cancer."

The panel will be held in conjunction with an ongoing WSIU series called "DNA Files," which will feature radio interviews with local experts in genetics and stem cell research.

ashley.wiehle@thesouthern.com

529-5454 ext. 5807