Bill seeks federal genetic testing protection
Legislation would prevent insurance discrimination
By Yvonne Lee
CNN
Becky Fisher started living early because she feared dying would come too soon. A gene plagues her family, predisposing it to a variety of cancers.
Ovarian cancer killed her grandmother at 41, and her mother developed breast cancer at 35.
"I got married really young because I really wanted a family," Fisher said, "and I also knew I was going to die young."
Fisher married at 21, had a baby at 22 and was battling breast cancer by 31. She's been in remission for 12 years, but is fighting a new battle.
Genetic testing revealed that her daughter, Kate, has the BRCA-1 gene, which is associated with colon and breast cancers. To safeguard Kate's future, Fisher's mission has become securing a federal mandate to prevent genetic discrimination by health insurers.
Almost all 50 states have laws addressing how to use, seek or disclose genetic information. Some require consent before testing; others define it as personal property and instruct employers to use it. Seventeen states have criminal or civil penalties for violating genetic privacy laws.
But Rep. Louise Slaughter, D-New York, maintains that state protections are not enough.
"Some of the state laws are very good, but it shouldn't be the luck of the draw whether you live in state x or y," she said. "That's the reason why it's so important that we have the federal legislation."
Vulnerable individuals
But there is another reason Slaughter said federal legislation is necessary.
The Health Insurance Portability and Accessibility Act, HIPPA specifically prohibits discrimination based on genetic information for private group health plans, but it does not protect those in the individual insurance market. HIPPA does not protect people filing workmen's compensation claims or seeking life insurance.
Current U.S. House and Senate bills add protections for individuals who want to undergo genetic screening, but are worried that the results might be used against them.
Slaughter's bill has been referred to the House Committee on Education and the Workforce, which will hold a hearing on it in the next few months.
"We have a busy schedule of hearings and markups already on the schedule for the next month, so we'll be looking to hold the hearing at the earliest date possible after that," committee chair John Boehner, R-Ohio, said.
America's Health Insurance Plans said insurers are not opposed to Slaughter's bill, but are concerned that doctors won't be able to ask relevant questions regarding family history, such as heart disease or diabetes.
Provider positions
Health insurers insist they are not denying coverage based on genetic predispositions. The Council of Actuaries conducted a survey and found that assertion to be true, said Karen Ignagni, president of America's Health Insurance Plans, a national association representing nearly 1,300 health insurance companies.
Several of the nation's largest health insurers point to their policies and positions as proof of nondiscrimination. Aetna has recommended that the health insurance industry consider adopting guidelines for access to genetic testing. Kaiser Permanente's application process includes screening for preconditions in the individual insurance market, but doesn't require genetic testing.
"We only evaluate based on your current health," Kaiser spokesman Mike Lassiter said. "We don't ask for medical records. We don't ask for any information you may have in terms of genetic testing."
Dr. Reed Tuckson, senior vice president of United Health Care said, said his company believes results of genetic tests "should not be used in any way to discriminate for either employment status or insurance coverage."
To test, or not to test
People who fear insurance discrimination may decide to skip genetic testing, but the screening offers some medical benefits, said Dr. Donna Krasnewich at the National Human Genome Research Center.
For certain diseases, genetic testing can save a patient's life. A specialist in gene testing, Dr. Barbara Weber at the University of Pennsylvania said, "Those who have gene mutations have shown very convincingly there are interventions that are very important."
The risk of getting ovarian cancer if a woman has a marker for a mutation is 40 percent, Weber said, compared to 1 percent if they are removed. Once a woman gets the cancer, there is an 80 percent to 85 percent chance of dying, she said.
With ovarian cancer, for example, there is no "real screening" for the disease, she said. "Almost everyone who gets it, dies from it," Weber said. "If you can identify the mutation carriers, you can get the ovaries removed after they bear children. It reduces the risk of dying dramatically."
