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US Jewish leaders are asking officials of the National Human Genome Research Institute (NHGRI) to discuss the possible development of working guidelines for genetic research on Ashkenazi Jews. They are alarmed by the sentiments reflected in recent newspaper headlines, such as one in New York Newsday which referred to bias against “mutant gene carriers”.

The current level of research attention by geneticists “feels uncomfortable to the Jewish community”, says Amy Rutkin, director of American affairs for Hadassah, the United States' largest Jewish membership organization. “But we understand how important this life-saving research is.”

Geneticists at Johns Hopkins University in Baltimore, Maryland, recently reported that they had found a genetic mutation in one of about 17 Ashkenazi Jews – those of Eastern European descent – that seems to double the risk of colon cancer (see Nature Genetics 17, 79–83; 1997). The research group says the mutation may be the most common cancer gene found so far within a particular population.

Their study adds to a growing list of mutations in the Ashkenazi population linked to disease, including Tay Sachs, Gaucher's and the 185delAG mutation associated with breast and ovarian cancer.

Such findings, which have already led to Jewish groups being targeted as a potential market for commercial genetic tests, could create the perception that Jewish people are unusually susceptible to disease, says Rutkin.

As a result, she warns, anyone with a Jewish-sounding last name could face discrimination in insurance and employment as companies struggle to keep down health-care costs. Hadassah has been lobbying for laws to forbid genetic discrimination. “Social stigmatization is a profound issue for our community,” Rutkin says.

History reinforces such fears. The eugenics movement in the 1920s viewed Eastern and Southern Europeans as genetically inferior in intelligence and prone to criminality. In the United States, these views spurred laws that limited immigration by Jews, other Eastern Europeans and Italians.

For NHGRI, Leslie Fink confirms that discussions are taking place about a formal dialogue with representatives of the Jewish community. She says the institute recognizes that it has a responsibility to combat stigmatization based on genetic difference, and is discussing how to deal with the problem.

Although every individual carries an equal number of genetic mutations that could lead to disease, more is known about the mutations prevalent in certain populations — including Ashkenazi Jews, Finns and Mormons — partly because researchers have found find these communities relatively convenient to study.

The main reasons are that they are identifiable as a genetically linked population and they tend to keep good genealogical records. As a result, it is much easier to track the presence of a particular mutation, its frequency and its link to the development of disease than it is among undocumented populations.

Another factor is that Jewish people in the United States have long been involved with genetic studies out of both commitment to public service and an awareness of the potential medical benefit to themselves. Genetic screening for Tay Sachs in this community is often held up as an example of the benefits such testing can bring.

But Harry Ostrer, a geneticist at New York University Medical Center who took part in the colon cancer research, says that some religious leaders, concerned about stigmatization both outside and within the Jewish community, have recently said that they would prefer genetic research on the Ashkenazi population to be abandoned altogether.

Ostrer warns that the premature introduction of genetic tests based on new findings could help to create false impressions and stimulate the discrimination that community activists fear. Hadassah wants to head off any possible backlash against genetic research among Ashkenazi Jews by educating both sides, Rutkin says. She praises NHGRI officials for helping to place recent findings in context.

But Rutkin says it is important for both researchers and members of the community to understand the full implications of genetic research. Scientists must also be more aware, she says, of the ways in which antisemitic notions of the past can become reflected in the interpretation of genetic research today.