The Naperville Sun
May 25, 2008
By Paige Winfield
Biggert's new law protects genetic test users
Insurers, employers can't discriminate against those at high risk for disease
Progress is supposed to quash discrimination, many would say. But cutting-edge genetic advancements are seeding a whole new branch of prejudice.
Stephanie Battaglia feared genetic discrimination when she tested for BRCA - a gene that, if mutated, greatly increases the bearer's chance of developing breast or ovarian cancers.
Ovarian cancer took the lives of Battaglia's mother, aunt, grandmother and great-grandmother, all before age 60. So when her cousin was diagnosed with breast cancer four years ago, Battaglia, 39, and her two sisters decided to take BRCA tests.
But the Hinsdale mother of six worried about how testing positive could hurt her if she ever needed to obtain private health insurance in the future. She was also concerned that the mere presence of a genetic test on her records could cause a company to inflate her premiums.
"They can tell me they're not going to discriminate against me, but I find that hard to believe," Battaglia said.
However, the fear of contaminating her medical records with a genetic test paled in comparison to lowering her cancer risk. After she tested positive, doctors at Loyola University Medical Center told her that by removing her breasts and ovaries, her risk of developing ovarian and breast cancer went from 87 and 60 percent, respectively, to almost zero.
Battaglia didn't hesitate, and had both surgeries done within the year.
"It's like having a weed in your yard," she said. "Are you going to hack it off, or let it grow?"
Obstacles to gene tests
Battaglia's fear is targeted by a new law signed by President George W. Bush last week that prohibits discrimination in employment and health insurance on the basis of a genetic test. The law will go into effect for insurance companies May 21, 2009, and will apply to all employers six months after that.
Co-sponsor U.S. Rep. Judy Biggert, R-Hinsdale, began working on the legislation five years ago after she was approached by the Coalition for Genetic Fairness. The coalition had been advocating for a genetic nondiscrimination bill since 1996 - when legislation was first introduced by Rep. Louise Slaughter, D-N.Y. - but versions of the bill sat dormant until the House and Senate almost unanimously passed the Genetic Information Nondiscrimination Act this session.
Coupled with more than 1,000 genetic tests developed as part of the Human Genome Project, GINA gives a green light to Americans who want to find out if their genes are predisposed toward diseases like cancer, heart disease, diabetes and Alzheimer's. As a member of the science technology committee, Biggert sat through House hearings on the $3.7 billion project to discover all the estimated 20,000 to 25,000 human genes.
"This is going to be the era of gene-based medicine, and this bill removes the obstacles for that," she said.
'Civil rights victory'
Biggert will appear in a PBS documentary airing this fall that explores the impact of testing for the BRCA gene. The film is produced by Chicago resident Joanna Rudnick who, like Battaglia, tested positive for the BRCA genetic mutation.
Rudnick calls the new law a "civil rights victory." It protects not just bearers of the BRCA gene, but those who carry any sort of genetic mutation - and that's every human being.
"I think at some point, you have to realize that everyone has mutations," she said. "Just because you might have some imperfect DNA, having a predisposition obviously does not guarantee 100 percent that I'm going to get the diseases. You cannot say that someone who has imperfect DNA is going to be penalized."
Now, Americans can set aside their hesitancy to receive genetic tests because insurance companies may not drop them or charge higher premiums based on results, she said.
"I've heard so many people say over the years, 'I'm afraid of getting tested because I'm afraid of losing my job or health insurance,'" she said. "That's been a terrific burden."
Personal property
Of the 33 states that have laws to protect genetic information, five explicitly define genetic information as personal property and 19 states - including Illinois - have defined specific penalties for genetic privacy violations, according to the National Conference of State Legislatures. But until GINA passed, only Washington state had a genetic employment discrimination law.
GINA doesn't ensure that insurance companies won't ever gain access to genetic testing information, said Sharon Terry, Coalition for Genetic Fairness president. But it does set up warning flags for companies and gives Americans prerogative to take action if they suspect they are being discriminated, she said.
"If your premiums went up one week after you received a genetic test, you might see a correlation and you could take action," said Terry, who believes genetic discrimination should be condemned just like racial, gender and religious discrimination.
It's hard to tell how many Americans have been the subjects of genetic discrimination, but Terry says the coalition has received hundreds of calls during the past 13 years.
According to a study by Virginia Commonwealth University, 84 percent of Americans are concerned that health insurance companies would deny coverage based on genetic information, and 69 percent of Americans believe employers would deny them jobs because of genetic test results.
Companies benefit, too
Americans' fear of discrimination by insurance companies may disadvantage those very companies in the long run, said Bhuma Krishnamachari, who was hired in August as Naperville-based Edward Hospital's first director of Genetic Counseling Services. By opting out of genetic tests that would allow personalized health care, a patient is holding onto medical risks that could be eliminated or at least reduced.
"If anything, (testing) is costing the insurance companies less money," Krishnamachari said. "It changes medical management."
Now that GINA has passed, genetic testing will grow in popularity and bring many more questions about oversight and expense, Terry said. She said CGF is looking at two new bills sponsored by Sens. Barack Obama, D-Ill., and Ted Kennedy, D-Mass., that address federal oversight and funding of genetic testing.
"(Genetic tests) are expensive. ... What kind of expenses will that bring to the medical system?" Terry said. "And we'll need to look at other issues, like oversight."
For all of the ethical, legal and medical questions that will continue to arise from genetic testing, one thing is sure: it saves lives. And for Battaglia, that's enough.
"I'm lucky because I got to look in a crystal ball," Battaglia said. "If I get some other kind of cancer, I can know that I did everything I could to be here." |