WASHINGTON (Apr. 26)
When researchers first discovered certain genetic mutations believed to predispose some Ashkenazi Jewish women to breast cancer, fear and confusion quickly spread through the Jewish world.
While the discovery brought the promise of life-saving medical breakthroughs, it also led to a misperception that Jews are more prone to genetic defects and disease.
The findings prompted Jewish women and others who believed they had a heightened risk of developing cancer to seek immediate testing. But when it became apparent that health insurance companies or employers might use the information as a basis to deny coverage or employment, many began opting against such testing.
There are concerns not only about discrimination and stigmatization, but about the possibility that Jewish fears surrounding genetic research may actually stem important medical progress and keep individuals from obtaining important health information.
It was with those concerns in mind that top officials of the National Institutes of Health, genetic researchers, rabbis from all denominations and Jewish officials from across the ideological gamut gathered in Washington last week to discuss genetic research and its implications for the Jewish community.
The conference, convened by Hadassah and the Jewish Council for Public Affairs, launched what Jewish leaders hope will be a coordinated effort to minimize the risks of genetic research and to call for laws to protect people’s privacy and to ensure that no one faces discrimination because of genetic make-up.
Genetic experts, pointing to what they said was misinformation contained in news reports in recent years including stories carrying such headlines as “Ashkenazi Jewish Women Stalked by Second Mutant Breast Cancer Gene,” sought to tone down what they see as inflammatory language and to present a more sober view of the risks facing Ashkenazi Jews.
“There is no evidence that the overall genetic burden of risk for disease is greater for one population than another,” said Dr. Francis Collins, director of the National Human Genome Research Institute, which is seeking to map the entire human genome by the year 2005.
Although certain mutated genes have been found in the Ashkenazi Jewish population, researchers emphasize that is simply because the community has been studied sooner and more extensively than other groups.
Genetic researchers have looked to the Ashkenazi Jewish population not because the Jews have more defective DNA than any other ethnic group, but because genetic patterns are easier to spot in isolated population groups where there’s less genetic variation.
Other isolated populations — including Finns, Icelanders, the Amish, Mormons and American Indians — are also favorites of genetic researchers.
“We are all walking around with flaws,” Collins said, adding that “somewhere between five and 50 significant flaws are present in the DNA of each one of us.”
The high number of findings relating to the Jewish community, moreover, can be attributed in large part to Jews’ long history of participation in genetic testing. Thousands of blood samples are on file at medical centers around the country as a result of screening for Tay-Sachs disease, a neurological illness that kills children at a young age.
Researchers studying two known breast cancer genes have identified three specific mutations common to Ashkenazi Jews. About 2.3 percent of the this group studied had one of the three mutations, which are also associated with ovarian and prostate cancer.
A gene linked to colon cancer has also been found in 6 percent of Ashkenazi Jews. A woman carrying one of the mutations has a 56 percent chance of getting breast cancer, compared to 13 percent for those with no mutation. Women carrying one of the genes have a 16 percent chance of getting ovarian cancer, compared to 1.6 percent for others.
And men with the mutation have a 16 percent chance of getting prostate cancer, compared to 3.8 percent of those without the mutation.
Collins emphasized, however, that only about 7 percent of breast cancer cases come from the mutated BRCA1 and BRCA2 genes. Carrying the mutated gene, therefore, creates “no perceptible difference” in risk “because most breast cancer comes about because of different reasons,” he said.
Ashkenazi Jews, whose ancestors are from Eastern and Central Europe, make up the overwhelming majority of American Jewry.
Jewish community leaders hailed the conference as an important first step in dispelling misinformation about Jews and genetics and for offering some perspective on the benefits of genetic research.
Marlene Post, national president of Hadassah, said the overriding goal of the Jewish dialogue on genetic research is “to ensure the continued participation by the Ashkenazi Jewish community in critical genetic research, within a framework where risks to the community are considered and minimized.”
Not all segments of the community, however, agree with the way the issue is being framed.
The American Jewish Congress released a statement, signed by several leading geneticists, asserting that Hadassah and JCPA were overstating the threat to the Jewish community.
The statement says that, in fact, Jews may be among the first to benefit through early access to genetic testing and treatment when it arises.
“Exaggerated emphasis on the risk of discrimination does a disservice to those who may benefit from genetic testing by depriving them of its beneficial results,” the statement says, adding that there is “little factual basis to justify such fears.”
For its part, Hadassah said it welcomed the document in the spirit of open debate about the issue.
While there may not yet be concrete evidence of discrimination, Jewish leaders and bioethicists say they do not want to be in a position of waiting for data to come in. They say there is enough anecdotal evidence to justify concerns, and point to a recent study by the National Institutes of Health in which 32 percent of women who were asked to participate in breast cancer genetic mutations research declined, citing fear of discrimination and loss of privacy.
For that reason. Jewish activists and bioethicists seek to launch a “pre- emptive strike,” as Karen Rothenberg puts it, to ban discrimination before it begins.
Rothenberg is a law professor at the University of Maryland who is studying the effects of genetic research on Jews.
Jewish groups and genetic researchers hope to achieve that strike through federal legislation barring health insurance companies from discriminating against people on the basis of their genetic backgrounds.
Rep. Louise Slaughter (D-N.Y.) and Sen. Olympia Snowe (R-Maine) are sponsoring bills in the U.S. House of Representatives and Senate that would prohibit insurance providers form denying, canceling or varying the terms of coverage on the basis of genetic information.
The legislation would also prohibit providers from requiring an individual to disclose genetic tests or releasing genetic information without prior written consent.
President Clinton has proposed similar legislation that would explicitly state that genetic information cannot be disclosed to insurers, employers or others regulated by state insurance laws.
“It’s a public policy necessity that if we don’t have genetic discrimination and privacy protections,” Rothenberg said, “we will not be able to take advantage of the research that holds promise — not just for the Jewish community itself, but for all of us.”