A genetic test that could provide early warning for women who have a high risk of breast or ovarian cancer is now available through local doctors, but policy experts are not necessarily recommending that you make use of it.
The threat of insurance and job discrimination against carriers of the gene far outweighs any benefits women might gain from knowledge of greater inherited risk, the health experts say.
“I think I would utter words of caution,” Dr. Susan Blumenthal, assistant U.S. surgeon general, said. “Until we have a cure for breast cancer or a way to prevent it, a woman really has to weigh the value of that (genetic) information against the risk of health and life insurance discrimination and of job discrimination.”
Mary Jo Ellis Kahn, a breast cancer survivor and board member of the National Breast Cancer Coalition, said: “Right now, for most women, this (test) doesn’t mean much. It is of limited value at the moment as a clinical test. For the vast majority of women, there is no prevention, no change of treatment. And it has a very real danger of contributing to discrimination. Most women will be like my family, struggling to decide if it’s better to know or better to protect yourselves.”
Richard Coorsh, spokesman for the Health Insurance Association of America, acknowledged that insurers would consider the tests in setting premiums and excluding coverage for some health problems.
“When anybody applies for coverage, insurers will look at their medical records,” Coorsh said. “And if they undergo any kind of test it will factor in setting their premiums.”
Such considerations would directly affect only the roughly 10 percent of Americans who purchase their health insurance directly. Most others are members of group or employer-provided plans. And some states have laws preventing companies from pressuring employees to undergo genetic tests or firing those who carry cancer genes.
But such state laws have only limited effect, according to Karen Rothenberg of the National Institute of Health’s Human Genome Project. That’s because most insurance information goes into national data bases that are outside any individual state’s jurisdiction.
In fact, many breast cancer researchers recommend that women pay cash for genetic testing to avoid creating an electronic trail on themselves and their family members.
Two bills to outlaw genetic discrimination nationally are pending on Capitol Hill; neither is expected to come to vote for several months.
The test, which looks for mutations in the BRCA-1 gene that was isolated in late 1994, is offered only to women who meet certain conditions. They must either already have breast or ovarian cancer (for instance, a woman worried about passing the gene to a daughter) or they must have a family member who has one of the cancers and is willing to be genetically tested.
Family studies are required because the mutant gene must be traceable through blood samples taken from various family members.
The test - the first available nationally outside of cancer research centers - is being offered by OncorMed Inc. of Gaithersburg, Md., at a cost ranging from $150 to $1,650, depending on the lab work needed in each case. OncorMed first looks directly for mutations known to be dangerous; if none are found, the gene is then taken apart piece by piece to determine if another mutation exists.
Different tests, looking at the same gene in different ways, are also being worked on elsewhere.
Testing is important because about 10 percent of the 183,000 breast cancer cases reported annually in the United States are known to be inherited. So far, more than 100 different mutations have been identified in BRCA-1, and about two dozen have also been found so far in BRCA-2, which was isolated late last year.
Testing for BRCA-2 mutations is not yet available, but should be soon since the technology is the same.
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