Breast Cancer Risk Test Raises Ethical Concerns

Federal scientists are still wrestling with how to ethically use an explosion of genetics research, even as a company announced Thursday that it soon will sell the most comprehensive genetic test yet to predict breast cancer.

The test is the latest entry in a race to bring to consumers the rapid discoveries of disease-causing genes.

But patients are struggling with the ramifications of learning they have diseased genes--when there’s little they can do about it.

“We’re going to have a lot of people potentially faced with information that is puzzling and frightening and no one to explain it to them,” said Dr. Francis Collins, chief of the federal Human Genome Project and a critic of selling gene tests before doctors better understand them.

A study published in Friday’s edition of the journal Science provides what Collins calls proof of genetic discrimination: Some 47% of people asked on health insurance applications about genetic diseases were rejected for coverage.

Some laboratories are quietly offering tests to indicate whether now-healthy Americans could get killer illnesses decades in the future.

The government has not decided whether or how to regulate such tests. But the market isn’t waiting.

On Wednesday, doctors can begin ordering from Myriad Genetic Laboratories Inc. a $2,400 test that for the first time promises to detect every known mutation on two genes, called BRCA1 and BRCA2, that can cause inherited breast or ovarian cancer. Previous tests have detected only a handful of mutations.

Only about 10% of breast and ovarian cancer cases are inherited. People with faulty BRCA genes are thought to have about an 85% chance of getting breast cancer and a 44% chance of getting ovarian cancer.

Myriad Vice President Mark Skolnick calls the test a revolution that empowers women.

The test is intended only for women considered at risk of inherited cancer because relatives have it.