Judging Genes: Part I, Jewish Genes
Miryam Z. Wahrman, Ph.D.
"Tay Sachs Disease, Canavan Disease, Familial Dysautonomia, Breast Cancer, Colon Cancer, Schizophrenia, Bipolar Disorder, oy vay, we must be a mess!" I posed this quandary at a recent panel discussion on "Genetic Manipulation: A Moral Dilemma?" held at Congregation Ahavath Torah in Englewood, NJ. I further explained that these are diseases for which Ashkenazi Jews have been identified to carry a unique gene. And it is known that Ashkenazi Jews harbor some of these genes at a higher frequencies than the general population.
The dilemmas of genetic engineering and gene therapy - including answers to those troublesome questions posed above - were recently presented to a group of dozens of business leaders, medical doctors, attorneys, professors and other professionals - all women - and all participants in the UJA Federation of Bergen County and North Hudson Business and Professional Women's Division dinner.
The panel was led by Rabbi David Feldman, spiritual leader of the Teaneck Jewish Center; other panelists were attorney and medical ethicist Dr. Adena Berkowitz, Rabbi Richard Weiss, M.D. spiritual leader of West Side Jewish Center in New York, and myself.
Rebecca Citron, founder of Sunnybrook Consulting, set the tone of the UJA- sponsored evening with a moving description of her travels throughout Russia in the dead of winter, and her descriptions of the impact American contributions make on quality of life of Russian Jews. "Russia is an enigma..." observed Citron. "You walk down the street and see the most beautiful fur coats... people beautifully dressed, side by side with incredible poverty." According to Citron, in one Jewish nursery school, run by "the Joint" [the American Joint Distribution Committee], "some of the children obviously look very Jewish, while others... look not Jewish at all." Citron reflected, "You realize that what has gone on in this community is a tremendous amount of intermarriage, and 'Who is a Jew?' is an issue there, .... but there whoever wants to be Jewish, is Jewish."
"We couldn't talk to [the children] at all," commented Citron, "but when they started to sing in Hebrew, songs that we knew and we could sing together, there was such a connection and we saw that these children are being raised Jewish, and that there was a perpetuation here." And UJA helps to provide assistance to all needy people in Russia who identify as Jews.
Ironically, the question of "Who is a Jew?" ties in all too well with the issue of Jews being genetically distinct due to Jewish genetic disorders. Knowledge regarding such genetic disorders naturally leads to other questions, such as "What are we permitted to do with that knowledge and with the power of genetic technologies?"
The panel moderator, Rabbi David Feldman, an expert in Jewish bioethics, addressed the issue of the use of genetic technology. "A major distinction needs to be made between genetic therapy and genetic engineering..." he asserted. "We want to be able to have recourse to genetic therapy if we can help prevent the development of a disease. And that would be permissible from a halachic [Jewish law] standpoint and a moral standpoint, because it's under the rubric of healing."
According to Feldman, genetic therapy which offers a cure for diabetes or dwarfism would be permissible. However, that differs from the type of genetic engineering which involves changing the genes in the germ line - which would be transmitted from generation to generation. "Genetic engineering where they say, 'I'd like to create a child with blue eyes, blond hair, who is tall, who is strong, who is brave, and who fits a certain image...' well that's arrogant, [since] you're just giving the child what you think is the right image," declared Feldman. "And that's a kind of interference which is blasphemous, irreligious, immoral and unhalachic. You can only do what restores the health, not what alters the person."
I continued the discussion by asking "Are there such things as Jewish genes?" Although Judaism is a religion, not a race, a large proportion of the Jewish people are descendants of the original band of Israelites. The Ashkenazim, in particular, share a number of distinctive genetic markers, some of which are genes responsible for serious diseases and disorders.
I explained that, in fact, disease genes are present in all populations. The New York Times Magazine (May 6, 2001) reports that higher incidences of specific disease genes include alpha-thalassemia in Chinese, clubfoot in Polynesians, familial hypercholesterolemia in French Canadians and Neural-tube defects in Irish people. "It is only because the Ashkenazi Jewish population has been cloistered for hundreds of years, and since the group has been subject to such scrutiny, does it appear that there are more disease genes in that group," I asserted. "In addition, Ashkenazic Jews have gone through what geneticists call a 'population bottleneck'. A population bottleneck describes what happens when many members of a group die, leaving only a few to replenish the numbers."
According to Dr. Kenneth Offit, Department of Human Genetics, Memorial Sloan-Kettering Cancer Center, the rise and fall of world Jewish population resulted in "founder genes" appearing in higher proportions in Jewish groups than in the general population. As a result of assimilation, crusades and pogroms, a peak population of 8-12 million Jews in the year zero of the Common Era plummeted to fewer than 500,000 Jews in the 1700's. Then, that small "founder population", where particular genes may have been found, underwent explosive expansion from 1720-1930.
Since most people in that founder population married within the group, their millions of Jewish descendants living in Europe in the twentieth century ended up with a high proportion of them carrying specific forms of genes from the founder group. Some of those genes may have been disease genes such as Tay-Sachs and the BRCA 1 and 2 mutations.
The Sephardim, who arose from populations of Jews who lived under Moslem rule in Spain, Portugal and the North African coast, and Oriental Jews, who established communities in the Middle East and Asia (including places such as Iran, India, Kurdistan, and Afghanistan) also exhibit unique genetic disorders characteristic of cloistered populations. However, since Sephardic and Oriental Jews dispersed into a number of isolated communities, smaller genetic subgroups emerged from their ranks. Each subgroup exhibits characteristic genetic disorders. For instance, Iraqi and Iranian Jews have higher incidence of Pituitary dwarfism, type II; Libyan Jews have elevated rate of Cystinuria; and for Moroccan Jews, Ataxia telangiectasia and Familial deafness are more prevalent.
The UJA Business and Professional Women's Division panel was organized by Marti Decker, Assistant Director of the Women's Division, and co-Chaired by Sandy Tenzer and Liz Roditi. The UJA Women's Division can be reached at (201) 488-6800 X 313., or firstname.lastname@example.org.
(Coming soon: Judging Genes, Part II: Gene Therapy)
© 2001 Miryam Z. Wahrman