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October 1, 2014 | 7th Tishrei 5775
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Jewish Genetic Diseases

Jewish Genetic



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.

For more information visit www.victorcenters.org

Clergy and Congregations Can Help

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.

Victor Center Brochure

The Victor Center helps build awareness and screening programs for the prevention of Jewish Genetic Diseases. Check out their brochure.
 
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