Skip To Content

Senate Paves Way for Genetic Anti-Discrimination Bill

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.”

I hope you appreciated this article. Before you go, I’d like to ask you to please support the Forward’s award-winning, nonprofit journalism during this critical time.

Now more than ever, American Jews need independent news they can trust, with reporting driven by truth, not ideology. We serve you, not any ideological agenda.

At a time when other newsrooms are closing or cutting back, the Forward has removed its paywall and invested additional resources to report on the ground from Israel and around the U.S. on the impact of the war, rising antisemitism and the protests on college campuses.

Readers like you make it all possible. Support our work by becoming a Forward Member and connect with our journalism and your community.

Make a gift of any size and become a Forward member today. You’ll support our mission to tell the American Jewish story fully and fairly. 

— Rachel Fishman Feddersen, Publisher and CEO

Join our mission to tell the Jewish story fully and fairly.

Republish This Story

Please read before republishing

We’re happy to make this story available to republish for free, unless it originated with JTA, Haaretz or another publication (as indicated on the article) and as long as you follow our guidelines. You must credit the Forward, retain our pixel and preserve our canonical link in Google search.  See our full guidelines for more information, and this guide for detail about canonical URLs.

To republish, copy the HTML by clicking on the yellow button to the right; it includes our tracking pixel, all paragraph styles and hyperlinks, the author byline and credit to the Forward. It does not include images; to avoid copyright violations, you must add them manually, following our guidelines. Please email us at [email protected], subject line “republish,” with any questions or to let us know what stories you’re picking up.

We don't support Internet Explorer

Please use Chrome, Safari, Firefox, or Edge to view this site.