Following more than a decade of advocacy by Hadassah and other Jewish organizations, the House and Senate have each passed a bill that would prohibit employers and health-insurance firms from discriminating against individuals based on information obtained through genetic testing.
"This is a sigh of relief. Beneficial testing doesn't have to bring with it the fear of discrimination," said Susannah Baruch, senior policy analyst at the Washington, D.C.-based Genetics and Public Policy Center at Johns Hopkins University.
More than 30 states had already enacted a similar type of statute; Pennsylvania was not among them. Advocates have claimed the patchwork of differing laws has been confusing and was largely ineffective at instilling confidence that genetic test results were not being misused.
"One of the goals is to have a strong federal rule, so your protections don't depend on where you live," added Baruch.
President George W. Bush is expected to sign the Genetic Information Nondiscrimination Act into law. On April 22, the Senate voted in favor of the bill, 95-0. Sens. Hillary Clinton, Barack Obama and John McCain were among the five who didn't vote.
On May 1, the House followed suit by a margin of 414-1. U.S. Rep. Ron Paul (R-Texas) was the lone holdout.
While there's no direct evidence that people have been denied health coverage or employment based on results from genetic testing, anecdotal findings suggest that many have steered clear of it out of fear that it could somehow be used against them.
"I do believe it was a perception. However, people didn't want to test that perception," said Joy Pollock, an Abington resident and national vice president of Hadassah, which has backed the bill since it was first introduced in 1995. "The hope is that now, many more people will be genetically tested."
New World of Options
Like many other proponents, Pollock hailed the bill's passage as a civil-rights milestone for the technology-centered 21st century.
When the bill was first introduced, most equated genetic screening with prenatal testing; that is, couples trying to discover whether they're at risk to pass on genetic diseases like Tay-Sachs — which is disproportionately found in Jews of Ashkenazi decent — to their children.
Other diseases historically found in high proportion in Ashkenazi Jews include Gaucher's disease, cystic fibrosis and Canavan's disease.
In the last decade, mapping of the human genome has become far more advanced. Tests not only reveal whether a patient is a carrier of an inherited genetic disease, but whether they carry a gene or gene mutation that may signal a likelihood of developing any number of illnesses later in life, such as heart disease and breast cancer. There are now more than 1,000 such tests.
Examples include the BRCA 1 and 2 gene mutations, which indicate a higher risk for breast cancer. While this has opened a whole new world of preventative options for patients, it has also increased the concern that such information might lead an insurer to charge higher premiums. Under the law, insurance companies are only supposed to obtain the results of genetic tests under very specific circumstances.
The new law will not apply to life-insurance policies. Separate long-term-care insurance policies would not be covered under the law, but plans that come as part of overall health coverage would be protected.
Baruch explained that over the past decade, the insurance industry and the business world have voiced concerns about various stipulations of the bill, but those had largely been ironed out during the course of negotiations. She explained that an amendment in the Senate version of the bill apparently gave insurance companies more confidence that they would not be exposed to so-called excessive lawsuits.
In 2003 and 2005, the Senate — where U.S. Sen. Olympia Snowe (R-Maine) was a prime sponsor — passed versions of the bill, but it went nowhere in the House. Last year, the House approved the measure, but it stalled in the Senate.
U.S. Rep. Joe Sestak (D-District 7) said that once the bill passed out of committee and made it to the House floor, "it became relatively clear that this was the right thing to do."
"When I came to Congress, it was one of those things that was below the radar scope, but it can have immense benefits down the road," he said.
The other local House co-sponsors were U.S. Reps. Allyson Schwartz (D-District 13), Chaka Fattah (D-District 2) and Jim Gerlach (R-District 6.)
"With the evolution of biomedical research, our nation's scientists have discovered opportunities to use genetic information to prevent, diagnose and more effectively treat some of the most devastating diseases of our lifetime," Schwartz said in a House floor speech. "We must ensure that these new revelations do not come with a price."
Paul, the lone dissenter, who officially remains a Republican presidential candidate, said in his own speech that "because of the federal government's poor record in protecting privacy, I do not believe the best way to address concerns about the misuse of genetic information is through intrusive federal legislation."
Encourage People to Test
Dr. Adel Schneider, director of the Victor Center for Jewish Genetic Diseases at Albert Einstein Healthcare Network, said that the Jewish community has had a relatively high awareness of genetic diseases and testing. Still, she hopes the law's passage will encourage more people to partake of the benefits of cutting-edge testing.
"Any young person over the age of 18 really needs to find out about their medical family history," said Schneider. "I think that this is a wonderful law because people are still very suspicious and very unsure about genetics. They are afraid because they don't understand it."