Articles


Groundbreaking Jewish genetic research gets national television stage

Posted On 03/18/04
By: Mike Cohen

MONTREAL — The story of a retired Montreal businessman whose groundbreaking genetic research has connected him with Jews around the world will be profiled on the CanWest Global-owned Prime Television network program Past Lives, on March 23, 25 and 27.

“Genealogy with a special reason,” reads the calling card of 70-year-old Stanley Diamond. More than a decade ago he learned that he was a carrier of the then newly identified mutation of the Beta-Thalassemia trait — which manifests itself as Thalassemia, the most prevalent inherited genetic blood disorder in the world. This discovery motivated him to identify his trait-carrying ancestry. He was also concerned that carriers like him were unaware that they could pass the characteristics on to their children and that the marriage of two unsuspecting carriers could result in offspring born with the deadly form Thalassemia major.

There are two main types of Thalassemia, alpha and beta. Beta-Thalassemia is found in three forms: Thalassemia major, the most severe form, often called Cooley’s Anemia; Thalassemia intermedia, a mild manifestation of Cooley’s Anemia; or Thalassemia minor, also known as Thalassemia trait.

While Beta-Thalassemia, which affects two million Americans, is well known to people of Mediterranean, Middle Eastern and Far Eastern descent, and to a lesser extent Sephardic Jews, it was almost unheard of in Eastern European Jewish populations. “For years, Thalassemia, or Cooley’s anemia, was thought to affect only Greek, Italian, Asian, and Sephardi Jewish families,” says Diamond. “In recent years, it became clear that Ashkenazi Jews also carry the trait and could be at risk for the fatal disease.”

Although Diamond’s initial goal in this project was to find other carriers of the specific mutation carried by his family (originally from Ostrow Mazowiecka in the old Lomza Gubernia of Poland) and a family in Jerusalem (originally from Bobruysk in Belarus) and identify the earliest carriers of this mutation in both families, he also wanted to alert unsuspecting Ashkenazi carriers outside of his own family. “This is the most urgent aspect, because the beta-thalassemia genetic trait is not usually found unless physicians are looking for it,” he warns. “Carriers are often misdiagnosed as being anemic and are incorrectly prescribed iron. Most carriers in my family learned that they carried the trait later in life, in some cases, long after having grandchildren. This late diagnosis could have been disastrous.”

Diamond learned he was a carrier of a unique mutation of the trait through the research of Montreal Children’s Hospital Research Institute’s Dr. Charles Scriver. Independently, Dr. Ariella Oppenheim at Jerusalem’s Hebrew University-Hadassah Hospital made a similar discovery with a woman who had emigrated from the former Soviet Union. The Montreal and Jerusalem families had originated about 300 miles from each other in the Pale of Settlement, the name given to an Eastern European geographic area in which Jews were allowed to settle from the late 18th to the early 20th centuries.

“Stanley’s success has increased my own determination. He is not only helping his own family but blazing a trail in a very crucial area,” says Phyllis Goldberg of Rockville Maryland. When Goldberg’s grandson Henry was born with Fanconi Anemia, she made a promise — inspired by Diamond’s quest — that she would leave no stone unturned until she found every member of her family at risk. Fanconi Anemia is a deadly disease caused by a mutation in one of several different genes, some of which are related to different ethnic types. The Eastern European Jewish variety makes up about 15 percent of the total cases. Goldberg believes she has traced that gene to her parental great grandfather.

An active family historian, Diamond is the founder and president of the Jewish Genealogical Society of Montreal (www.jgs-montreal.org) and founder and executive director of Jewish Records Indexing-Poland (www.jri-poland.org), an award-winning project to index the Jewish vital records of Poland. More than two million records are currently available online and more are added every month.

Diamond says the prime objective of the Jewish Genealogical Society of Montreal and its sister societies in Toronto, Ottawa, Winnipeg, Calgary, Vancouver and around the world, is to guide genealogists and non-genealogists on how to search for their unknown or lost families. It promotes awareness of the resources available within and beyond the community for tracing Jewish ancestors. Research techniques are shared while information on genealogical research is disseminated to family historians and professional genealogists alike. It also serves as a networking forum for personal research and a bridge to Jewish genealogists around the world. Monthly meetings of the Montreal society at the local Jewish Public Library feature guest speakers, workshops, field trips, and hands-on research.

“Some family historians want to know about all the generations of musicians or scholars, and some want to track down every family story that has been passed down through the generations,” says Diamond. “But today there is a growing recognition of the need to also fill in the ‘medical’ field in your genealogical computer program.”

Diamond’s personal website can be accessed at www.diamondgen.org.