Dei'ah veDibur - Information & Insight

A Window into the Chareidi World

29 Av 5763 - August 27, 2003 | Mordecai Plaut, director Published Weekly









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Shema Yisrael Torah Network
Shema Yisrael Torah Network











Melbourne's Groundbreaking Tay Sachs Prevention Program
By Shlomo Boruch Abelesz

A `world-first' for the Melbourne Jewish community was the recent official launch of the Melbourne Tay Sachs Prevention Program which took place in the local Bnai Brith hall. The launch was attended by the local Federal member of Parliament, Mr Michael Danby, and leaders and representatives of shuls, Jewish communual organizations and schools.

Parents and educators heard short speeches and discussions by various experts in this field -- and had the opportunity to ask questions about the groundbreaking new testing method to be introduced in the Melbourne program. The new method utilizes a "gene sequencer" (a very modern technology that was used in the Human Genome Project) and involves only a swab of the cheek with a brush. It will be available shortly to all Jewish school students and the community in general in Melbourne.

The force behind this undertaking is the well-known Orthodox Jewish geneticist Dr. Agnes Bankier, who almost singlehandedly has brought this project to fruition after five years of planning and fundraising. She convinced donors, charity foundations and government departments of the importance and necessity for this gene sequencer, and raised the purchase cost of A$250,000. Her efforts deserve the thanks and praise of the entire community.

Following the swab with a brush, the laboratory will supply results using a system that is much quicker and more streamlined, and at least as reliable, as the current blood testing system. It has the added advantage of causing none of the discomfort or fear that may have prevented some young people from taking advantage of Tay-Sachs testing in the past.

Within a few months all Jewish students from the age of 16 and above will have the opportunity to be tested -- without charge -- for five conditions that are more prevalent among Ashkenazi Jews than among the general population: Tay Sachs, cystic fibrosis, Fanconi anaemia, Canavan disease and familial dysautonomia.

The program will offer the option of receiving written results of the tests or using the anonymous method used by other organizations. There will be counsellors and experts available to advise those tested and their families.

It is hoped that with the help of further sponsorship these tests will be made available free or for a very minimal fee.

Another feature of this new testing method is that it will be able to service participants not only from all over Australia -- but worldwide. A cheekbrush used to scrape the inside of the mouth may be mailed to Melbourne from where results will be supplied.

Following the official launch by Mr. Danby, the audience was addressed by Dr. Martin Delatycki, director of the Center for Genetic Health Research at Melbourne's Royal Children's Hospital and the head of the project Dr. Bankier. She thanked Mr. Danby, the various benefactors and government departments, including the Pratt and Gandel Foundations, Mr. and Mrs. Izzy Herzog and Mr. and Mrs. M. Casen, as well as those who had given her strong moral support. She expressed her appreciation to HaRav Avrohom Zvi Beck, the spiritual leader of the chareidi Adass Yisroel Kehilla, with whom she had consulted throughout the planning stages and who has given this project his fullest backing.

Other Jewish communities in the world have expressed their interest in this new groundbreaking undertaking, and Dr. Bankier will be advising and assisting them in the future.

QUESTIONS AND ANSWERS About The New Genetic Testing Program In Melbourne

Q: In what way is this test different from other programs?

A: This is not a blood test. The `gene sequencer' method is done taking a painless swab of the cheek with a small brush. It is as accurate as all the other tests for identifying carriers of Tay Sachs disease in Ashkenazim.

Written results are available, while those who so prefer can still go on an anonymous program.

Testing will be free (or at a minimal cost) to students.

Q: What genetic tests will be available?

A: To begin with, Tay Sachs and cystic fibrosis -- the main conditions that need to be checked. However by the end of the year, there will also be checking for Fanconi anaemia, Canavan disease and familial dysautonomia.

Q: How is it planned to implement this program in Melbourne?

A: Every year those students who have reached the age of 16 will be tested, either at school or, for our overseas students, twice yearly, during the Pesach and Succos holidays.

Q: How much will it cost?

A: The Tay Sachs test will be free for Year 11 students, with other tests and ages still being reviewed.

Q: What about additional genetic conditions?

A: The new groundbreaking method being used -- utilizing the gene sequencer -- means that in the future, further genetic tests may be available.

Q: This sounds great! Anything else we should know?

A: Yes. No urgent results will generally be available. These tests should be done at age 16 [with results in your hand a few weeks later] -- so when a shidduch is offered, you are fully aware of your situation.

Q: Any other advice?

A: Yes. Parents of large families should consider doing the tests upon themselves -- and if both are negative, then there is no need for their children to be tested. This is only possible where the program gives the results to the person tested.

Compiled by Shlomo B Abelesz and reviewed by Dr Martin Delatycki, director, Bruce Lefroy center for Genetic Health Research, Clinical Geneticist, Genetic Health Services Victoria, Royal Children's Hospital, Melbourne, Australia. Inquiries: S B Abelesz -- Tel 0407 233 244, 9525 5338, 9528 5632 e-mail:


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