Orthodox Jewish communities, shrouded in mystery and preserved by tradition, remain a small but easily recognized fixture in America’s Jewish population. According to a 2013 Pew Research Center Survey of US Jews, Orthodox Jews make up roughly 10% of the adult Jewish population in the United States . Within the Jewish community, the Orthodox are identified by their strict adherence to religious law. Orthodox Jews are also recognized by their modest, traditional dress and tight-knit communities. More likely than the other branches of Judaism to attend religious services frequently and send their children to Jewish schools, Orthodox Jewish families are also more likely to marry within their own communities . For young Orthodox Jews preparing to enter the dating pool, the matchmaker, known as a Shadchan in Hebrew, has always played an invaluable role in deciding their futures. To this day, professional matchmakers are still called upon to pair young Orthodox couples, making them a key aspect of the fabric that makes up Orthodox life.
In past centuries, however, these intra-communal marriages have had disastrous effects for many young families who find that both husband and wife are carriers for genetic diseases prevalent within Ashkenazi Jewish communities. As opposed to Sephardic Jews hailing from North Africa and Spain, Mizrahi Jews from the Middle East, or other ethnic groups within the religion, the ancestry of Ashkenazi Jews comes from Central and Eastern Europe . Throughout history, Eastern European Jews were repeatedly sequestered into isolated communities within their home countries of Russia, Germany, Poland, and Romania, among others. After generations of reproduction within these communities, particular genetic diseases developed a higher carrier rate than those seen in other populations. The genetic ghost of this period continues to hang over many individuals of Ashkenazi descent around the globe.
The most prominent of the diseases unevenly affecting Ashkenazi Jews is Tay-Sachs Disease. Tay-Sachs is a genetic disease in which children lack a vital enzyme that is used in the process of breaking down a fatty waste substance found in brain cells . The inability to carry out this process leads to the progressive destruction of nerve cells in the brain and spinal cord. Although Tay-Sachs can present with infantile, juvenile, or adult onset, infantile onset is by far the most common form. In these cases, affected children usually die by the age of four or five and there is a 100% fatality rate . While babies with Tay-Sachs appear healthy at the time of birth and develop normally for the first few months of life, they then begin to regress. The children lose motor skills and mental functions, gradually becoming blind, deaf, and paralyzed before dying .
In order for a child to have Tay-Sachs, both parents must carry at least one copy of the recessive gene? In the general population, about one in 250 people carry the Tay-Sachs gene. In certain specific populations, however, this carrier rate is substantially higher. Irish Americans, for example, have a heightened carrier rate of one in 50. French-Canadian and Cajun populations have the same carrier rates as Ashkenazi Jews with one in 27 people carrying the recessive gene .
The prevalence of Tay-Sachs has diminished in many Jewish populations as Ashkenazi Jews have been intermarrying with Jews from other parts of the world as well as non-Jews for decades. But for the Orthodox, marriages that go no further than the local community left the number of Tay-Sachs cases relatively unchanged for years. That is, until one desperate father worked to bring modern genetics into the traditional world of Orthodox matchmaking.
In 1983, Brooklyn Rabbi Yosef Eckstein’s wife gave birth to their fifth child, their fourth born with Tay-Sachs. The couple was heartbroken when they discovered that yet another of their children would succumb to the awful disease and felt they had no way to predict or prevent the outcome . Through his own research, Rabbi Eckstein learned that members of the larger Jewish community had worked to reduce the occurrence of Tay-Sachs by performing DNA tests for couples before they had children. Orthodox communities had not caught on to the trend, largely because of the fear of stigma falling upon families who tested positive as carriers.
With a strong desire to protect other families from the horrors of Tay-Sachs and an intimate understanding of Orthodox communities, Eckstein developed Dor Yeshorim, a program devised to screen high school students for the recessive gene while keeping the results anonymous from the teenager and their family . Dor Yeshorim operates events within Jewish communities to collect blood samples and perform DNA tests. When a teenager is tested, a pin number is linked to their blood sample and the test results are entered into a database. Thus, when a matchmaker later makes a match for two young adults, their pin numbers are entered into the database and a response indicates whether or not the two would make a good match. If both individuals are carriers of the gene, the matchmaker will not proceed with the match and the relationship will be broken off before it begins . Because most young Orthodox Jews will not spend time with the opposite sex unsupervised and only a few meetings will take place before the engagement, few hearts are broken in the process. If one or neither of the individuals are carriers, the engagement process will proceed.
Today Dor Yeshorim operates in eleven countries and has expanded to include testing for various other genetic diseases prevalent among people of Ashkenazi Jewish descent including Familial Dysautonomia, Cystic Fibrosis, and Canavan Disease . The organization claims major successes including the fact that the Tay-Sachs ward at Kingsbrook Jewish Medical Center in New York, which once had patient waiting lists, has had no new patients since 1996 . The growth of Dor Yeshorim has brought cutting-edge genetics into a traditional world that has famously rejected many aspects of secular society, forever changing the matchmaking process.
In the wake of Dor Yeshorim’s success has come the question of whether or not to expand the program to larger communities and other genetic diseases. While the idea of testing before marrying sounds appealing for reducing the prevalence of genetic diseases, most American populations do not strictly intermarry within their communities or use matchmakers. Without a matchmaker acting as an intermediary, individuals would have to know and be willing to share their own test results.
Additionally, few genetic diseases carry the same hopeless prognosis that Tay-Sachs does. While Tay-Sachs is clearly tied to genetics and is fatal in children, many diseases have more ambiguous ties to genetics, lower prevalence rates, and a much greater quality of life. Testing for these diseases would raise the ethical question of what odds are great enough and which diseases serious enough to discourage two individuals from having children.
Dor Yeshorim has been a remarkable success in effectively ending the scourge of Tay-Sachs in Orthodox communities and is a beautiful example of scientific advancement made compatible with a traditional world. For many other hopeful parents, genetic testing may help them feel more confident in their family planning and address family histories of genetic diseases before trying to conceive. Yet for many people, the ethical questions raised by genetic testing may weigh heavily on the path to conception.
- “A Portrait of American Orthodox Jews.” Pew Research Centers Religion Public Life Project RSS. August 26, 2015. http://www.pewforum.org/2015/08/26/a-portrait-of-american-orthodox-jews/.
- Solomin, Rachel M. “Sephardic, Ashkenazic, Mizrahi Jews: Jewish Ethnic Diversity.” My Jewish Learning. http://www.myjewishlearning.com/article/sephardic-ashkenazic-mizrahi-jews-jewish-ethnic-diversity/4/.
- “Tay-sachs Disease.” National Tay-Sachs & Allied Diseases Association of Delaware Valley. http://www.tay-sachs.org/taysachs_disease.php.
- Ossola, Alexandra. “How DNA Testing Transformed Matchmaking in Orthodox Jewish Community | Genetic Literacy Project.” Genetic Literacy Project. April 29, 2015. https://www.geneticliteracyproject.org/2015/04/29/how-dna-testing-transformed-matchmaking-in-orthodox-jewish-community/.
- Dor Yeshorim. Dor Yeshorim: Fulfilling Our Responsibility to the Next Generation. January 01, 11. http://doryeshorim.org/wp-content/uploads/2015/11/Program-Brochure.pdf.
- Wailoo, Keith, and Stephen Gregory. Pemberton. The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease. Baltimore: Johns Hopkins University Press, 2006.
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- Independent. August 14, 2014. http://www.independent.co.uk/life-style/health-and-families/features/why-i-left-the-ultra-orthodox-jewish-community-as-kids-we-were-told-that-the-outside-world-hated-us-9668865.html.
Sedona Rosenberg is a rising sophomore at the George Washington University hoping to major in Public Health and minor in English.