Genetic Screening and Judaism
Using modern medical technology a wide range of genetic maladies can be detected, but is that a good thing?
The following article represents a good overview of the Jewish ethical and legal implications of genetic screening. It should be noted, however, that the specific legal conclusions of the writer are arrived at using specifically Orthodox sources. The article is reprinted with permission from Biomedical Ethics and Jewish Law, published by KTAV.
Many years ago, Rabbi Moshe Feinstein was asked whether or not it is advisable for a boy or girl to be screened for Tay‑Sachs disease, and if it is proper, at what age the test should be performed. His answer was: “it is advisable for one preparing to be married to have himself tested. It is also proper to publicize the fact, via newspapers and other media, that such a test is available. It is clear and certain that absolute secrecy must be maintained to prevent anyone from learning the result of such a test performed on another. The physician must not reveal these to anyone…these tests must be performed in private, and, consequently, it is not proper to schedule these tests in large groups as, for example, in Yeshivas, schools, or other similar situations.”
Rabbi Feinstein also points out that most young people are quite sensitive to nervous tension or psychological stress and, therefore, young men (below age twenty) or women (below age eighteen) not yet contemplating marriage should not be screened for Tay‑Sachs disease. Finally, Rabbi Feinstein strongly condemns abortion for Tay‑Sachs disease and even questions the permissibility of the amniocentesis which proves the presence of a Tay‑Sachs fetus, since amniocentesis is not without risk, albeit small.
In 1968, Rabbi Eliezer Yehudah Waldenberg published a responsum allowing abortion following amniocentesis during the first trimester if the fetus is determined to have Tay‑Sachs disease. “If there is a strong suspicion that the fetus will he born physically deformed and suffer greatly, one can allow abortion prior to forty days of conception and perhaps even up to three months of the pregnancy before the fetus begins to move.” Eleven years later, Waldenberg published a second responsum allowing termination of pregnancy for Tay‑Sachs disease up to the seventh month of pregnancy because “the defect, the anguish, the shame, the physical and mental pain and suffering of the parents are inestimable.”
Two methods now exist for totally eliminating the need for prenatal screening for Tay‑Sachs disease and the serious halakhic (Jewish legal) objections to abortion if the fetus is found to be affected. The first method is to perform confidential premarital screening and to strongly discourage the marriage of two carriers. This approach is widely utilized in many orthodox Jewish communities and is under the sponsorship of the Dor Yeshorim organization which claims to have tested over 70,000 people and identified over 100 at risk couples who were advised to avoid such at risk marriages. In the United States, the program has been so successful that presently a baby born with Tay‑Sachs disease is more likely to be a non‑Jew than a Jew. In Israel, such a program to screen for carriers of Tay‑Sachs disease since 1986 has resulted in no Tay‑Sachs children being born to newlywed couples in the ultra orthodox Ashkenazi Jewish community.