Genetic Screening and Judaism
Using modern medical technology a wide range of genetic maladies can be detected, but is that a good thing?
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.
The second method to prevent the birth of a Tay‑Sachs baby is to perform preimplantation screening of the in vitro fertilized zygotes if both husband and wife are known carriers and to only use the healthy ones for implantation. The discarding of the affected zygotes is not considered an abortion since the status of a fetus or a potential life in Judaism applies only to a fetus implanted and growing in the mother’s womb. This artificial method of conception is sanctioned by many rabbis for couples who cannot have a child in the normal way in order to enable them to have a child, albeit by assisted reproduction. The Jewish legal question of using artificial means of conception to screen potential fetuses for genetic diseases has yet to be ruled on decisively by modem rabbinic authorities. This seems to be an ethically acceptable option for couples where both husband and wife are carriers of a recessive genetic disease such as Tay‑Sachs or if one partner is a carrier of a dominant gene such as Huntington’s disease (an inherited degenerative disorder which affects both body and mind) or of a sex‑linked genetic disease such as hemophilia.
It is not clear whether Judaism sanctions genetic screening for diseases for which no effective treatment yet exists. Judaism is greatly concerned about the emotional burden (tiruf hadaat)that such knowledge may place upon a person found to have the gene for Huntington’s disease in the presymptomatic stage (symptoms most commonly appear between the ages of 35 and 50). Judaism would also not sanction the prenatal testing for Huntington’s disease if the only purpose is to abort the fetus if it is found to be affected. Preimplantation screening of Huntington’s disease and the choosing of only unaffected zygotes for implantation may be permissible to prevent the birth of an affected child as described above for the prevention of Tay‑Sachs disease. The same permissive view might apply to the prevention of hemophilia births by preimplantation screening.
Newborn screening for treatable diseases such as phenylketonuria and congenital hypothyroidism should certainly be done. Judaism subsumes such testing under the biblical and rabbinic mandates to patients to seek healing from the medical profession.
Judaism requires that confidentiality of test results for all types of genetic screening be maintained. The prohibitions in Judaism against talebearing (Leviticus 19:16) and evil gossip (Psalms 34:14) are discussed at length in the Talmud (Yoma 4b, Sanhedrin 31a) and in the codes of Jewish law such as Maimonides’ Mishneh Torah (Deot 7:2). An entire book was written on this subject by Rabbi Israel Meir Hakohen of Radin, popularly known as Chafetz Chayim. These prohibitions require that professional confidences between patient and physician be maintained. Whether the physician obtains such confidential information, genetic or otherwise, from the patient or from others, he is forbidden to disclose that information or share it with anyone including the patient’s family and even professional colleagues, if no benefit to the patient would result therefrom. However, if the maintenance of confidence might cause serious physical, financial, or emotional harm to another person, the latter may be informed. Thus, a person who is the carrier of a serious and potentially lethal genetic disorder is obligated to divulge that information to a prospective spouse.
More difficult to resolve is the question as to whether or not an Ashkenazi Jewish woman with the gene for breast cancer BRCA 1 or BRCA 2 is obligated to tell that to a prospective spouse or to her husband if she is already married. Modem rabbinic authorities have not yet ruled on whether it is even appropriate to test for that gene in all Jewish women. It may be reasonable to do so in women with very strong family histories of breast cancer. But to what end? If they are found not to have the gene, the risk of developing breast cancer is still high. But women found to be positive for the gene may wish to take action such as more frequent mammography, prophylactic hormonal treatment, or even prophylactic mastectomies. Current rabbinic authorities need to address these urgent questions to provide guidance on the Jewish religious views on these genetic issues. Should genetic screening include diseases where the clinical outcome is uncertain? For example, in cystic fibrosis, Gaucher’s disease, hemophilia and other diseases, early death is rare and the disease expression may be mild, moderate, severe, or life threatening even through adolescence and early adulthood.
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