By Lisa Seachrist
WASHINGTON — In 1996, researchers announced that a specific mutation in the breast cancer gene BRCA-1 occurred at high frequency in Ashkenazi Jews.
Then, two more mutations, one in BRCA-1 and one in BRCA-2, were found to be relatively common among the same group of Jews. Last year, scientists found a gene associated with colon cancer that once again shows up with high prevalence in the Ashkenazim.
Some Jews have begun to question whether biomedical research has their best interests at heart, or whether it serves to characterize Jews not only as different but genetically inferior. And in that concern lies a stark reminder of the Holocaust, when Nazi eugenics policies led to extermination of millions of Jews.
"The Human Genome Project is telling us not how different we are, but how similar," said Francis Collins, director of the National Human Genome Research Institute. "We share 99.9 percent of our genes with every other human. The Human Genome Project will tear down preconceptions about race and ethnicity."
Collins acknowledged that such confidence provides cold comfort to Jews who read about the Jewish cancer genes in both the popular and Jewish press. As a result of community concerns, Hadassah (the Women's Zionist Organization of America) and the Jewish Council for Public Affairs convened a panel of Human Genome Project participants, legal experts and policy makers to discuss the implications of genetic research for the Jewish community.
Concerns Apply To Other Groups
"If we do not sit together in the same room and listen to each other, we will walk around in a vacuum of misconceptions and misperceptions," said Hadassah's president, Marlene Edith Post. "This is just the beginning of future dialogues. In the end, we are helping the whole community not just the Jewish community."
"With all these genetic discoveries coming in Ashkenazi Jews, people have begun to ask, 'Why are they always studying the Jews?" said panel participant Karen Rothenberg, professor at the University of Maryland School of Law, in Baltimore. "Why are they always picking on us? It's a sentiment that needs to be addressed in order for research to continue."
Collins said each human being carries five to 50 significant genome alterations. Identifying disease genes involves finding which alterations are associated with disease. Because the human genome is a vast sea of information, genetic researchers limit their searches to a smaller pond of related individuals who suffer from the disease.
Like the Finns, Icelanders, Amish and American Indians, Ashkenazi Jews all descended from a relatively small population of a couple hundred to a couple thousand "founders." The Ashkenazim originated in eastern and central Europe. Whether confined by geography or religious and cultural traditions, centuries of living, marrying, and bearing children in isolation produce a relatively homogenous genetic population where specific genetic alterations are easy to find.
Geneticists refer to such circumstances as "the founder effect" because the genetic alterations present in the genomes of the "founders" can become enriched as the population expands. For that reason, genetic researchers have found it useful to study the Amish, American Indians, Finns, Icelanders and Ashkenazi Jews, among others.
"It's not that Jews or Finns carry more harmful mutations than other people," Collins said. "They are just more likely to carry certain ones."
However, understanding the utility of those populations for research while simultaneously believing that genetics will in the end tear down the concept of race and ethnicity can confuse even an educated audience of rabbis and Jewish community leaders.
One participant asked both Collins and National Cancer Institute Director Richard Klausner to explain how there can be genetic mutations prevalent in Jews while there isn't a genetic basis for being Jewish.
"An increased frequency of one genetic change has no implication about genetic differences in general," Klausner said. "A founder effect for the BRCA-1 gene does not define the Ashkenazim. No set of genes overlaps in any precise way to define an ethnic group. There are no neat compartments that define our species."
Federal Protections Under Consideration
Nevertheless, the fear that Jews will be seen as genetic misfits or somehow stigmatized and discriminated against in health insurance and employment opportunities as a result of scientific research has led Hadassah to call for federal protections to ensure genetic privacy and fair use of genetic information.
"We want to see genetic research fulfill its promise," said Amy Rutkin, Hadassah's director of American affairs. "We can't do that without changing the public policy framework — people may be too fearful to participate in scientific studies."
Rutkin said Hadassah supported Rep. Louise Slaughter's (D-N.Y.) ban on genetic discrimination, H.R. 306, and Sen. Olympia Snow's (R-Maine) companion bill because they were actually complete entities. However, neither bill has seen committee or floor action. Slaughter, who participated in Wednesday's program, noted the House leadership has refused to give the bill priority. *