Clinton backs plan to bar insurers from genetic bans

The issue strikes close to home for many in the Jewish community in light of recent research showing that Ashkenazi Jewish women have a hereditary susceptibility to breast and ovarian cancers.

The legislation would put an end to the practice by barring health providers from disclosing such information.

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 simply opted not to be tested.

"Americans should never have to choose between saving their health insurance and taking a test that could save their life," Clinton said during a recent ceremony in the White House East Room.

"It's wrong when someone avoids taking a test that could save a life just because they're so afraid the genetic information will be used against them, and too many women today fear that that will happen when they decide to test or not to test to see if they carry the gene for breast cancer."

Such discrimination, Clinton added, is "a life-threatening abuse of a potentially life-saving discovery."

Clinton's announcement provides a shot in the arm to women's health-care advocates who have been leading a charge in recent months to address the problem of genetic discrimination.

Hadassah and the American Jewish Congress' Commission on Women's Equality, together with other Jewish groups, have been at the forefront of the effort.

Amy Rutkin, director of American affairs at Hadassah, praised Clinton's announcement, saying the legislation "would end the shameful practice of health insurance discrimination based on genetic information."

The law, she added, would "allay the real fear in our community that obtaining one's own genetic information or participating in genetic research could result in the loss of access to health care."

Recent studies have confirmed that certain mutations of the BRCA-1 and BRCA-2 breast cancer genes occur with higher-than-expected frequency in Ashkenazi Jewish women than in other population groups.

Scientists estimate that about one in 40 Jewish women carry one of these BRCA mutations. The presence of one of these mutations means that an individual has a 50 percent likelihood of developing breast cancer.

However, since most cases of breast cancer are not inherited, Ashkenazi Jewish women only have a slightly increased risk — 1 to 2 percent — of developing breast cancer over their lifetimes than does the general population.

Lois Waldman, director of the AJCongress' Commission on Women's Equality, called the legislation "badly needed," adding that it's "not just about breast and ovarian cancer."

"With the Humane Genome Project uncovering new gene mutations that predispose people to all sorts of diseases, I think it's badly needed for everybody because health insurance is such an important and basic need," she said.

"So long as we don't have universal health care, this is at least plugging some of the gaps."

The White House said Clinton hopes to build on a bill sponsored by Rep. Louise Slaughter (D-N.Y.) and Sen. Olympia Snowe (R-Me). The legislation has bipartisan backing, including support from Sen. Bill Frist (R-Tenn.), a heart surgeon.

The president is pushing for a modified version of the legislation which would explicitly state that genetic information cannot be disclosed to insurers, employers or others regulated by state insurance laws.

The bill is designed to close certain loopholes in health insurance legislation signed into law last year that made some initial strides in addressing the issue.

That legislation, known as the Kennedy-Kassebaum health reform bill, includes genetic information under its definition of a pre-existing condition and prohibits insurers from discriminating on that basis.

But the reform measure, which went into effect on July 1, limits protections to selected individuals covered under group medical plans. The new legislation would make the protections universal.

The administration's decision to push for heightened protection followed the recommendations of a task force report from Donna Shalala, secretary of health and human services.

Addressing Hadassah's national convention in Chicago last week, Shalala praised Hadassah's efforts to end genetic discrimination by promoting legislation "that gives Americans the protection and peace of mind they deserve."