Learning session on Jewish Genetic Diseases at the 2011 URJ Biennial
Our
Jewish tradition encourages us to make every effort to prevent and diminish
human suffering. One way that individuals and congregations can work to
accomplish this goal is to gain and share information about a number of
genetic diseases which occur disproportionately within the Jewish
community.
Genetic
screening for diseases where being a carrier does not affect one’s health, enables
individuals to learn important information about the genes they may pass on to
their offspring. A simple blood test can give you information that will empower the
individual/couple to plan for future children to be born without diseases that
are preventable
Educational efforts in the general community
have increased awareness about some genetic diseases such as Tay-Sachs, but
other genetic diseases for which testing is available are less well known.
There are now 19 diseases for which screening is available. All of the diseases on the panel are severe
and many are life threatening or fatal in childhood.
Congregations, clergy and professionals who work
with young adults on college campuses and in other communal settings
have a special role to play in increasing awareness and diminishing
suffering caused by Jewish Genetic Diseases.
Those
involved in officiating at marriages and in pre-marital counseling have
an especially urgent responsibility to provide this information.
Some
may mistakenly hesitate to make young people aware that their Jewish
heritage may put them at risk for bearing children with serious
diseases. Sharing this information affords a critical opportunity to let
them know that their Jewish community is deeply committed to helping
them to have healthy families and to accompanying them through all of
life’s many challenges and joys.
Even before
marriage and planned pregnancy both individuals and couples need to be
aware of the availability of screening so that they can become proactive
in family planning.
Your congregation can provide information about Jewish Genetic Diseases in a variety of ways:
Clergy can make this information available to all the couples with whom they meet prior to marriage.
Preschools
can provide information to parents of young children who may add to
their families but may believe because they have one healthy child that
they are not at risk.
Older teens can be provided with
information in Confirmation and Youth Group programs that allow for
discussion of basic medical facts as well as ethical considerations.
Health
fairs can be held in which professionals from organizations committed
to providing education and screening can be present.
Adult
education programs can be held which include text studies and
discussions of bio-medical ethics so that congregants can have an
opportunity to learn of the rabbinic and scientific discourse on these
issues.
The URJ is here to help you to
develop programming about Jewish Genetic Diseases in your congregation.
Please contact Rabbi Edythe Mencher, LCSW, Caring Community and Jewish
Family Concerns Specialist at emencher@urj.org or 212.650.4296.
One
vital step is to make a connection to excellent organizations which can
provide the most up to date medical information, videos, brochures,
speakers and referrals to highly trained geneticists.
The Victor Center helps build awareness and screening programs for the prevention of Jewish Genetic Diseases. Check out their brochure.
Connect with 
Multimedia: 