Jewish Genetic Diseases: The Information You Need

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 that occur disproportionately within the Jewish community. The National Tay-Sachs and Allied Diseases Association (NTSAD) identifies genetic disease as “a disorder caused by an abnormality in DNA.”

Educational efforts in the general community have increased awareness about some genetic diseases such as Tay-Sachs ( a deadly disease of the nervous system), but other genetic diseases for which testing is available are less well known. In actuality, the Victor Center reports, there are now 19 diseases for which screening is available, all which are severe and may be life-threatening or fatal in childhood.

Genetic screening – even and perhaps especially for diseases in which 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 provide results that will empower individuals and couples to plan for their future children to be born without preventable diseases. Learn more about the 19 Jewish genetic diseases and how you can proceed with genetic testing.

Congregations, clergy, and professionals who work with young adults on college campuses and in other communal settings also 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. Though some may 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 young Jews know that their religious community is deeply committed to helping them to have healthy families and to accompanying them through all of life’s many challenges and joys.

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. Start with the resources below to learn more, and contact Rabbi Edythe Mencher, URJ Faculty for Sacred Community

• URJ’s Jewish Genetic Diseases Page
  This page is home to all of the Reform Movement’s resources on Jewish genetic diseases, including suggestions to help congregations provide this vital information to their members.

• Victor Center for the Prevention of Jewish Genetic Diseases
  The mission of the Victor Centers for the Prevention of Jewish Genetic Diseases is to ensure ongoing access to comprehensive genetic education, screening and counseling services

• 2008 URJ/Jewish Family Concerns Resolution on Jewish Genetic Diseases
  In 2008, the Reform Movement resolved to encourage all members of our congregations who are of Eastern/Central European descent and are between the ages of 18 and 45 to consider screening for Jewish genetic disease carrier status.

• “Conversations with an Affected Family”
  Wondering what a day in life of a family with an affected child is like? Rabbi Lawrence Sernovitz, whose son has has Familial Dysautonomia, responds.

• Jewish Genetic Disease Consortium
  This alliance of not-for-profit organizations, of which the reform Movement is a part, increases awareness about Jewish genetic diseases and encourages timely and appropriate genetic screening for all persons of Jewish heritage.

• “The Link Between Wedding Planning and Genetic Testing: A Jewish Perspective”
  A soon-to-be-married couple isn’t convinced they need to be tested for Jewish genetic diseases. Their rabbi weighs in.

• “One in Five: Why You and Your Congregation Must Know About Jewish Genetic Diseases”
  This learning session at the 2011 URJ Biennial focused on educating congregational leaders and Jewish families about Jewish genetic diseases. A video recording of the entire session is available on YouTube.