washington

Senior officials from the National Institutes of Health (NIH) last week met publicly for the first time with a broad spectrum of Jewish leaders on the increasingly sensitive issue of the meaning of genetics research for Jews (see Nature 389, 322; 1997).

Francis Collins, director of the National Human Genome Research Institute and Richard Klausner, director of the National Cancer Institute, addressed 40 Jewish leaders covering denominations from ultra-liberal to Orthodox in a meeting in Washington.

Marlene Post, president of Hadassah, the Jewish women's organization that sponsored the meeting with the Jewish Council for Public Affairs, said that all participants shared a concern that fear of discrimination and stigmatization “could actually stem important genetic research”. It might also discourage individuals from seeking important health information through genetic testing.

“We need to protect ourselves both from discrimination and ignorance,” Klausner told the meeting. “We've got to start breaking down myths that ethnic groups mean genetic groups. They don't.”

Both the scientists and Jewish participants expressed concern over the lack of legal protections against genetic discrimination. The US Congress has not passed any comprehensive law against job or insurance discrimination based on genetic information, and appears highly unlikely to do so this year.

There are also signs that fears of stigmatization and of losing, or being denied, jobs and health insurance are preventing some from taking part in population studies essential for tracking down disease-causing genes.

Some 90 per cent of America's six million Jews are Ashkenazi, a group descended from central and eastern European ancestors. Their intermarriage over the centuries has produced a population highly attractive to geneticists, for whom Ashkenazim, like Icelanders and Finns, provide a relatively homogenous group in which mutations are easier to detect.

But the results of early research have alarmed some Ashkenazim. Researchers have found that about 2.3 per cent of Ashkenazi women carry particular mutations predisposing them to breast and ovarian cancer; last September, the corresponding figure for colon cancer was published as 6.1 per cent.

Collins stressed that such findings do not indicate that Jews are any more predisposed to mutations than other populations, but merely that they have been the first to be studied. The “silver lining” for Ashkenazim, he added, is that they may be the first to benefit from drugs and other therapies that will derive from the work.