A Message from Peter E. Kasdan
by Rabbi Peter E. Kasdan
The
fight to eliminate Jewish genetic diseases has been a major focus of
Rabbi Peter E. Kasdan, chairman of the new Canavan Foundation Rabbinic
Advisory Committee. Rabbi Kasdan insisted that all couples married
by him be tested before their wedding day - initially for Tay Sachs
disease and then, as new tests became available, for additional Jewish
genetic diseases. Rabbi Kasdan retired in June, 2002 after thirty years
at Temple Emanu-El of West Essex in Livingston, NJ. He spoke with us
recently from his home in Florida about his new association with the
Canavan Foundation.
"When I started at Temple Emanu-El in 1971, there
was a member of the congregation who was very active in Friends of ARC
(Association of Retarded Citizens); her oldest child had Down's Syndrome.
This was in the early 70's when people were just learning how much Down's
Syndrome patients could do, when moving their muscles and limbs for
patterning was first tried. They needed a place to do this work, and
I gave them space in the Temple.
"In the course of my rabbinate at Temple Emanu-El,
I also buried several of my students whose lives were shortened because
of a particular Jewish genetic disease: a young man with Bloom syndrome,
a young woman with Gaucher's, and another young man who died from cystic
fibrosis. Their lives touched many people in our Temple family, so much
so that we may have had a higher-than-usual awareness of some of these
diseases.
"One of the ways I tried to get this message across
was to force my high school senior students to study Jewish genetic
disease. I contacted the National Foundation for Jewish Genetic Disease
in New York City, and they supplied me with brochures that listed all
of the known Jewish genetic diseases. I was also fortunate to have among
my congregants a genetic counselor who worked at the New Jersey School
of Medicine and Dentistry. She brought her expertise in genetic disease
in general, and Jewish genetic diseases in particular, and had an incredible
impact on my students.
"I felt early on that awareness was so important.
There were so many people--smart, educated people--who didn't know anything
about these matters. It seemed obvious that one of the things I could
do to bring about greater awareness was to insist that every couple
who came to me for premarital counseling was tested. Then at least they
would have some idea of the risks and the options. If they resisted
testing, then I told them that I wouldn't officiate at their wedding
ceremony; that got the message across that I was serious about this
issue. It always worked.
"I want the Rabbinic Advisory Committee to increase
that same kind of awareness on a larger scale. I want this group to
help me create a mechanism that will enable the Canavan Foundation to
educate rabbis who are already working and serving, as well as rabbinical
students who are being trained to go out into the Jewish world. I'm
planning to approach Reform rabbis first, because that is the group
I know best, and then my Conservative and Orthodox colleagues. I want
them to become as aware as I am about the entire list of Jewish genetic
diseases, so they can counsel people effectively.
"And it's not just rabbis who need this training.
One of the problems in today's world is that medical doctors, obstetrician-gynecologists,
don't get much training in genetic diseases, surely not in Jewish genetic
disease. There are many practicing ob-gyn's out there-several of them
good friends--who know nothing about Jewish genetic diseases. If you
want to start a family and you are at risk-and all Jews are-you need
to find an ob-gyn who has a background in genetic diseases.
"I was chosen, I think, to head this group for
my personal passion on this issue as well as for my ability to get other
people to come on board and serve with me. There is so much we can do
to educate people. But there's an awful lot of work to do before we
get to the point that everyone is aware of their choices."
