President's Message
by Stanley M. Hordes
from HaLapid Winter, 2008
The other day, the editor of HaLapid forwarded to me a link to an interesting website for the Jewish Genetic Disease Consortium . The home page of this site features an array of historical family photographs under a banner headline reading, “They Didn't Know. Do You?” and the warning, “Jews of Ashkenazi descent are at increased risk for passing down a gene mutation for a tragic genetic disease to their children.” Succeeding pages contain valuable information pertaining to some eleven illnesses, all associated with “Ashkenazi” Jews. (www.jewishgeneticdiseases.org).
Why should we find a site like this more than a little troubling? Of course, no one can challenge the importance of warning a population at risk that they might well be susceptible to contracting life-threatening diseases. The problem, from my perspective, stems from the fact that the developers of this site make the unwarranted assumption that only “Ashkenazi” Jews are affected by the illnesses that they label as “Jewish Genetic Diseases,” thus ignoring the millions of Sephardim (including those of crypto-Jewish descent), and other non-Ashkenazi Jewish populations.
Last August, the New Mexico Jewish Historical Society conducted a workshop immediately prior to the SCJS's Annual Conference in Albuquerque, “Jewish Genetic Diseases and their Presence Among Hispanic Populations in the US Southwest” (See the article by Kathleen Alcalá in the last issue of HaLapid ). The purpose of this program was to foster greater communication and collaboration among geneticists, clinical physicians, historians, anthropologists and genetic counselors who are actively engaged in research regarding certain genetic diseases found among Jewish populations in New Mexico and the US Southwest. During the course of the workshop, experts from a variety of disciplines discussed the presence of so-called “Ashkenazi” diseases among Sephardim, in the Southwest, as well as throughout Latin America , in areas where Ashkenazi settlement was sparse or non-existent.
Diseases such as Bloom's Syndrome (cited by the aforementioned website as linked to Ashkenazim), Pemphigus Vulgaris, and Kaposi's Sarcoma, as well as the genetic mutation, 185delAG BRCA I, associated with breast and ovarian cancer, all previously regarded as “Ashkenazi” have appeared among Hispanos in New Mexico and elsewhere.
So the obvious question is: despite evidence to the contrary, why are such diseases still referred to as purely “Ashkenazi?” Is it because Sephardim have never been tested for these illnesses? Is it due to an inherent cultural bias against Sephardim that renders them invisible, or not worthy of inclusion or study? What will it take to attract the attention of those who make such decisions and influence them to reconsider their narrow categorization of diseases that affect a wider population of Jews and descendants of crypto-Jews?
Like the Jewish Genetic Disease Consortium, we, too, would like to alert our friends and colleagues who are exploring their crypto-Jewish roots that they might be at risk of contracting one of several genetic diseases. Early testing and diagnosis may well save lives.
All of the participants in the August workshop resolved to continue their work to raise the level of consciousness about this important issue. This meeting was only the first of many such symposia, and it is hoped that the Society for Crypto-Judaic Studies will continue to play a strong role in supporting this effort.