Washington - Legislation aimed at preventing discrimination against carriers of illness-causing genes was expected to pass in the Senate April 24, ending a 13-year-long congressional standoff.
Jewish groups have played an active role in pushing for the bill, a reflection of the issue’s importance for Jews. Jewish women have been at the center of the debate over genetic discrimination, following the 2000 discovery of a genetic mutation tied to breast cancer among Ashkenazic Jewish women.
Proponents of the legislation see it as essential not only in ensuring that people carrying genes relates to sicknesses are not singled out when seeking insurance and employment, but also to counter the reluctance of patients to undergo genetic testing for fear of future discrimination.
The new bill, known as the Genetic Information Nondiscrimination Act, or GINA, will prohibit health insurers from denying coverage or raising premiums to individuals based on their genetic testing results. It will also bar employers from firing or limiting benefits for the same reasons.
The bill was opposed in its early years by business groups that argued it would add unneeded legislation and would open the door to unnecessary litigation. But the most recent and effective obstacle was presented by Senator Tom Coburn, an Oklahoma Republican who last year put a hold on the bill because of what he saw as the lack of separation between the requirements from insurers and those from employers. In the first week of April the Senate Democratic leadership opened talks with Coburn, leading to an agreement that ended the hold and allowed the bill to reach the floor.
The historically close-knit nature of Jewish communities and the generations-long tradition of endogamy or “marrying in” have made Jews an ideal group for genetic research. One of the first specific genes tied to a disease was BRCA1, which indicates a higher risk for breast cancer among Jewish women carrying this gene.
“Suddenly there started to be all these articles suggesting that Jews have more defects than other groups do,” said Marla Gilson, director of Hadassah’s Washington Action Office, which is lobbying for the bill. According to Gilson, the high degree of genetic relatedness within Jewish community makes it ideal for further research and therefore vulnerable to possible bias from insurers and employers.
Examples of actual discrimination that reached the courts are hard to find. In a case settled out of court in 2002, the Burlington Northern Santa Fe Railroad Company was sued for unlawfully taking DNA samples from its workers and testing them to asses their risk of certain diseases.
But groups lobbying for the bill argue that the problem could become more widespread as more genetic tests become available. They argue that Jewish women are reluctant to take tests that could identify the risk for breast cancer and probably save their lives because of their concern that if this specific gene is found, they may be refused health insurance.
In a 2004 public hearing held by the government’s advisory committee on health, genetics and society, testimony was given by people who allegedly suffered discrimination. Among them was a woman who told of her family being denied health insurance because of genetic tests her children went through, and another women who told of refusing to undergo genetic testing for genes relating to breast cancer even though several of her family members had the disease.
Genetic tests are available now for more than 1,500 diseases, according to a recent report compiled by the Center for American Progress, and the number is constantly rising. The report found that even though there is an increase in the availability of genetic tests and a decrease in their price, many people still avoid taking them.
“This means that patients are foregoing tests that could specify the elevated risk factors that they carry,” the report concludes. “As a result, they are not obtaining information that could inform their or their children’s lifestyle and health care decisions and prevent disease.”