More parents ponder cancer gene tests for children

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 done 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 experts advise against such testing before age 25, saying that 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 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 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 Jenna wanted to be tested at age 13.

Research also 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, like Stoller, 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.

Men can also 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.

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.

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.

"I feel very strongly that people should not test their children, but children should make their own decision," said Jill Stoller, a New Jersey pediatrician who is the mother of Jenna, the Cornell student.

Jenna had hours of counseling before doctors agreed that for her, testing was the right choice.

However, Jennifer Scalia Wilbur, a counselor at Women and Infants Hospital in Providence, R.I., told of a 19-year-old who had testing without counseling and now wants to remove her breasts and not have children.

"It was extremely distressing" to talk with her now and try to correct her overly dire outlook, she said.

One of Bradbury's studies, recently published in the American Journal of Medical Genetics, explored how sons and daughters ages 18 to 25 were affected by learning that a parent had tested positive.

Some effects were good — five of the seven smokers said they were motivated to quit.

Most said the knowledge had no big negative effect, but six of the 22 said they felt frightened or disturbed.

"I was shocked, scared. I wondered if I was going to get the gene and realized I could pass it to my (future) kids. I would feel like it was my fault if they got cancer," one daughter said in the survey.