WASHINGTON (Jun. 26)
Like President Clinton before him, President Bush has given his backing to legislation barring health insurance companies from discrimination on the basis of an individual’s genetic background.
But this time around, Jewish health care advocates think a bill, currently pending in Congress, has a better chance of becoming law because it has the backing of top congressional leaders.
The legislation also may get a boost from the field of genetic science. With the map of the human genome completed, the need to protect genetic information from abuse has become more accepted.
Hadassah: The Women’s Zionist Organization of America, has placed the effort to ban genetic discrimination as its top domestic policy priority since medical studies have found that some genetic mutations predisposing individuals to certain forms of cancer, particularly breast and ovarian cancers, have particularly high frequencies among Ashkenazi Jews.
Recent studies have confirmed that certain mutations on the BRCA 1 and BRCA 2 cancer genes occur with higher-than-expected frequency in Ashkenazi Jewish women than in other population groups.
Scientists estimate that about 1 in 50 Jewish women carry one of these BRCA mutations.
However, since most cases of breast cancer are not inherited, Ashkenazi Jewish women only have a slightly increased risk — about 1 percent — of developing breast cancer over their lifetimes than the general population.
In his radio address this weekend, Bush noted that current laws have not kept pace with the issues raised by the scientific and technological progress of genetics, and said the White House is working to shape legislation that will make such discrimination illegal.
“Genetic discrimination is unfair to workers and their families,” Bush said. “We will all gain much from the continuing advances in genetic science, but those advances should never come at the cost of basic fairness and equality under law.”
When Bush was governor of Texas, he signed legislation in 1997 that prohibited genetic discrimination in employment and group health plans.
Legislation to prohibit health plans and insurers from discriminating with respect to genetic information — known as the “Genetic Nondiscrimination in Health Insurance and Employment Act” — has broad bipartisan support in the U.S. House of Representatives.
Supporters of the legislation maintain that employers could be tempted to deny a job based on a person’s genetic profile and insurance companies could use genetic information to deny coverage or charge excessive premiums.
Fearing that genetic screening information could jeopardize their access to health care, Jewish women and others who believe they may have a heightened risk of developing cancer have opted not to be tested.
Rachel Zenner, director of American affairs and domestic policy for Hadassah, said that fear is harmful to genetic research because it prevents people from participating in genetic studies that could further health research.
Jews are being studied because of their high levels of intra-marriage — and that gives the mistaken impression that Jews are much more at risk for genetic mutations, Zenner said.
There are rumors circulating that a genetic discrimination amendment might be added to the patients’ bill of rights now moving through Congress.
But Hadassah and other groups worry that such an amendment might be a weakened version of the genetic discrimination act.
Hadassah, for example, would not support an amendment if it didn’t offer legal recourse to people who have been discriminated against.