- The Washington Times - Monday, September 29, 2008

CHICAGO | Women are going for breast cancer gene testing in record numbers, forcing more parents to face a tough question - should we test the children?

About 100,000 tests for breast cancer gene mutations were performed last year, double the number in 2005. The trend may grow even more because of widening insurance coverage and a new law banning genetic discrimination.

Medical professionals advise against such testing before age 25, saying little can be done to prevent or screen for breast or ovarian cancer until then, so the knowledge would only cause needless worry.

However, new studies and interviews by the Associated Press show that many people who have BRCA gene mutations - and even more of their offspring - disagree.

Cornell University freshman Jenna Stoller is one.

“I’m the kind of person that, like my mom, am more comfortable knowing something about myself than not knowing,” said Miss Stoller, who tested positive earlier this year, shortly after her 18th birthday. Her mother made her wait five years after revealing her own positive test result, even though Miss Stoller wanted to be tested at age 13.

“I remember thinking on my 17th birthday that I had another year to wait till I could make the decision for myself,” she said.

Research shows there can be benefits to at least talking about testing and inherited cancer risks with teens. It led some to quit smoking, one study found.

Others were advised to limit alcohol and avoid birth control pills, which can raise the risk of breast cancer though they also lower the risk of ovarian cancer.

A decade after BRCA testing began, researchers are just starting to discover the many effects that someone’s positive test can have on other family members. A big issue is whether it is ethical or good to test minors.

“I’ve seen a fair number of parents in clinic who have really struggled with this question,” said Dr. Angela Bradbury, a breast cancer specialist at Fox Chase Cancer Center in Philadelphia who has led several studies on the topic.

Myriad Genetics Inc., based in Salt Lake City, sells the only BRCA gene test, which costs up to $3,000.

Men also can carry a BRCA mutation, and if either parent does, a child has a 50-50 chance of inheriting it. The mutations are most common in people of Eastern European Jewish descent.

Women with a faulty gene have a three to seven times greater risk of developing breast cancer and a higher risk of ovarian cancer. Men have more risk of prostate, pancreatic and other types of cancer.

To lower risk, women can consider anti-estrogen drugs or having their breasts or ovaries removed. But these drastic measures are not advised for very young women. Even mammograms are not advised till age 25, because cancer is rare before then.

So the American Society of Clinical Oncology and other groups say that when the risk of childhood cancer is low and nothing can be done to lower it, children should not be given gene tests.

“The rule is, do no harm - test only if you can offer something that will help,” said Mary-Claire King, the University of Washington scientist who in 1990 discovered the first breast cancer predisposition gene, BRCA-1.

“The life of a young girl is complicated enough already. There is nothing about it that needs to change” if she carries one of these genes, Miss King said.

But some parents are testing girls before they even have breasts, let alone cancer risk. One woman had her 4-year-old daughter tested, said Sue Friedman, executive director of FORCE: Facing Our Risk of Cancer Empowered, a Tampa, Fla.-based support group for people with BRCA genes.

Another woman tested two young children several years ago at Baptist Health South Florida in Miami.

“We wanted to know - it’s as simple as that,” she said. “Kids are born with all kinds of defects that parents have to make decisions about. I just think this is one of those things,” said the woman, who spoke on the condition of anonymity because of privacy concerns for her children.

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