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: sba@iprimus.com.au
