Premarital genetic testing
In order to avoid the potentially devastating impact of genetic testing on a couple who are already engaged or married, it is best to perform carrier testing prior to engagement. Within the Jewish community, a system of premarital genetic testing for a number of conditions has been established. This project is called Dor Yesharim, The Committee for Prevention of Jewish Genetic Diseases (718-384-2332 in the U.S., or 972-2-537-2111 in Israel). Dor Yesharim currently performs carrier tests for Tay-Sachs, Canavan disease, Fanconis Anemia, Cystic Fibrosis, Familial dysautonomia, Glycogen storage disease (type 1), Bloom syndrome, Niemann-Pick disease, Mucolipidosis (type IV), and Gaucher's disease (only by request).
Individuals are tested before beginning the search for a marriage partner, but are not told the results of the test. A couple considering marriage notifies Dor Yesharim and is informed whether or not there is a problem. The couple is not told what disease they carry, just that the match is likely to lead to a child affected by one of these conditions.
As this system takes the halachic concerns into consideration, it has the approval of many leading halachic authorities. It is also subsidized. However, Dor Yesharim will only test people prior to an official engagement, and does not give specific test results. Therefore, some couples will choose to have the testing done privately.
If a couple has not been tested prior to marriage, they should consult with their rabbi about doing tests at a later point. There are grounds to permit testing at any stage if it could lead to an intervention that would be beneficial to the health of the fetus.
Organizations that provide genetic screening and counseling for Jewish genetic diseases in the United States include:
- The Victor Center for Jewish Genetic Diseases (http://www.einstein.edu/jewishgenetics)
- The Chicago Center for Jewish Genetic Disorders (http://www.jewishgeneticscenter.org/)
- The Jewish Genetic Diseases Center of Greater Phoenix (http://www.jewishgeneticsphx.org/jgdc_press.html)
- The Jewish Genetic Disease Consortium (http://www.jewishgeneticdiseases.org)
- JScreen (http://jscreen.org)
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