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Genetic screening, gene therapy, and other applications of genetic engineering are permissible in Judaism when used for the treatment, cure, or prevention of disease. Such genetic manipulation is not considered to be a violation of God's natural law, but a legitimate implementation of the biblical mandate to heal. If Tay-Sachs disease, diabetes, hemophilia, cystic fibrosis, Huntington's disease, or other genetic diseases can be cured or prevented by "gene surgery," then it is certainly permitted in Jewish law.
Genetic premarital screening is encouraged in Judaism for the purpose of discouraging at-risk marriages for a fatal illness such as Tay-Sachs disease. Neonatal screening for treatable conditions such as phenylketonuria is certainly desirable and perhaps required in Jewish law. Preimplantation screening and the implantation of only "healthy" zygotes into the mother's womb to prevent the birth of an affected child are probably sanctioned in Jewish law. Whether or not these assisted-reproduction techniques may be used to choose the sex of one's offspring, thereby preventing the birth of a child with a sex-linked disease such as hemophilia, has not yet been ruled on by modern rabbinic decisions. Prenatal screening with the specific intent of aborting an affected fetus is not allowed according to most rabbinic authorities, although a minority view permits it "for great need." Not to have children if both parents are carriers of a genetic disease such as Tay-Sachs is not a Jewish option. Preimplantation screening is preferable. All screening test results must remain confidential. Judaism does not permit the alteration or manipulation of physical traits and characteristics, such as height, eye and hair color, and facial features, when such change provides no useful benefit to mankind. On the other hand, it is permissible to clone organisms and microorganisms to facilitate the production of insulin, growth hormones, and other agents intended to benefit mankind and to cure and treat diseases.
Genetic information about a person's health and health prospects can be inferred from family history or by direct genetic testing. Such testing can involve sophisticated molecular analysis for the mutant gene (e.g., cystic fibrosis) or simple biochemical (e.g., hypercholesterolemia), enzymatic (e.g., Tay-Sachs disease), hematological (e.g., Sickle cell diseases), or chromosomal (e.g., Down's syndrome) analysis of blood or body fluids or tissues.
Points to consider before embarking on carrier-screening programs include the nature and frequency of the disorder and the availability and effectiveness of treatment, community perception of the disorder and attitudes to screening, motivation for screening, how the test is done and what the results mean, obtaining informed consent and maintaining confidentiality of results, when to screen, education before screening, possible stigmatization and discrimination, and the organization of the screening program. The Council on Ethical and Judicial Affairs of the American Medical Association has addressed ethical issues related to prenatal genetic testing, genetic testing by employers and insurers, and carrier screening for cystic fibrosis and other disorders.
How does society control the way genetic information is obtained and used? How does society monitor and review genetic screening programs? What criteria should be set to make maximum use of the potential good that the Human Genome Project offers, without infringing on the ethical and legal principles of privacy, autonomy, beneficence, confidentiality, and nondiscrimination? Who owns genetic information? How should genetic information be used? Who decides which people should be screened? Are there or should there be limits to preimplantation, prenatal screening, and neonatal screening? How should employers and insurers receive and use genetic information? Do we have sufficient data to judge the pros and cons of genetic testing and screening? The Orthodox Jewish community relies on the traditional use of biblical and talmudic law and rabbinic responsa to answer such questions. This approach is described in this essay on traditional Jewish views on genetic issues.
The genetic testing and counseling of children and adolescents is associated with special ethical, legal, and psychological implications. The risks and benefits of testing have to be assessed to determine whether it is in the child's best interests to be tested.
About 5-10 percent of all breast cancer cases are hereditary. The breast cancer genes known as BRCA1 and BRCA2 are responsible for most inherited breast cancer, especially in women who develop the disease before the age of 40 years. The BRCA1 mutation known as 185delAG is found in approximately 1 percent of the Ashkenazi Jewish population and in 20 percent of Ashkenazi Jewish women who develop breast cancer before 40 or 42 years of age. This gene is also associated with an increased risk of ovarian cancer. These findings and observations are cause for concern. Early interventions may be appropriate in high-risk women who test positive (e.g., more frequent breast examination and mammography, prophylactic mastectomy, hormone prophylaxis). There are many other issues of concern, including confidentiality, access, autonomy, and informing the patient about the implications of a positive or negative test, including its technical accuracy and cost.
The availability of a test does not require that it be offered universally. The American Society of Clinical Oncology recommends that cancer predisposition testing be offered only when the person has a strong family history of cancer or very early age of onset of disease, when the test can be interpreted adequately, and when the results will influence the medical management of the patient or family member. However, many other prestigious organizations emphasize that BRCA1 testing remains a research activity for the time being. The pitfalls of genetic testing and the psychological issues in testing for breast cancer susceptibility should not be minimized. People at risk must fully understand the risks, benefits, and limitations of genetic testing, the risk of psychological harm, and the possibility of insurance discrimination and subsequent loss of healthcare coverage, before they undergo testing.
Debate continues about the screening of large populations of Jewish people for the carrier state of Tay-Sachs disease to prevent the "inappropriate" marriage of two carriers. Also controversial is the performance of amniocentesis for the prenatal detection of the fatal disease, with the subsequent possible abortion of an affected fetus. Selected termination of affected fetuses may not be acceptable in Judaism, although some rabbis might sanction it. Mass screening programs may produce a psychological burden on young people who screen positive. Should a carrier of the Tay-Sachs gene refuse to marry an individual who has not been tested? Should a couple break up their engagement if they learn that both are carriers? Should a young person inquire about the Tay-Sachs status of a member of the opposite sex prior to meeting that individual on a social level? Must a person who knows he or she is a carrier divulge this fact to an intended spouse?
The stigma of being a carrier of the Tay-Sachs gene may not be fully appreciated. Misinformed or uninformed people may shun and ostracize carriers. Job and insurance discrimination is also possible if confidentiality of testing results is not assured. If the purpose of Tay-Sachs screening is to provide information and genetic counseling about mating and reproductive options, few will oppose screening. If the purpose, however, is to suggest prenatal diagnosis with the specific intent of recommending abortion of affected fetuses, religious and moral objections might be raised. Preimplantation diagnosis of in vitro fertilized eggs, with the discarding of affected zygotes, if any, avoids the issue of pregnancy termination, since pregnancy in Judaism does not begin until zygote implantation into the wall of the uterus.
Genetics and Eugenics in Classic Jewish Sources
Ancient Jewish writings, including the Bible and Talmud, are not devoid of material relating to genetics. One writer describes in some detail how the laws of Mendelian genetics were applied by Jacob in the biblical narrative of the speckled and spotted sheep (Genesis 30:32 ff.). Hemophilia and its precise genetic transmission is described in the Talmud (Yebamot 64b). The sages in the Talmud and subsequent rabbinic authorities had a remarkable knowledge of the genetics of this sex-linked disorder. All rabbis recognized that females transmit the disease but do not suffer from it. A few rabbis also considered the possibility of its transmission through males.
Elsewhere (Ketubot 10b), the Talmud portrays a family whose women had hereditary absence of menstruation and no blood of virginity, and were obviously childless. The exact nature of the anatomical or physiological abnormality is not described.
It is prohibited in Jewish law to marry a woman from a family of epileptics or lepers lest the illness be genetically transmitted to future generations (Yebamot 64b; Maimonides' Mishneh Torah, Issurei Biyah 21:30; Karo's Shulchan Aruch, Even Haezer 2:7). According to Rashi (Yebamot 64b), any hereditary disease is included in this category. This talmudic ruling "may well represent the first eugenic enactment, and the only legislative bar to the procreation of a diseased progeny, in ancient and even medieval times". On the basis of the higher frequency of defective births resulting from unions among blood relatives, Rabbi Judah the Pious, in his ethical will, prohibited marriages between first cousins and between uncles and nieces. Yet such marriages are sanctioned in the Bible and expressly encouraged in the Talmud (Yebamot 62b, Sanhedrin 76b). Since consanguineous marriage increases the probability of birth defects, some rabbis ban such marriages, while others strongly caution against them.
Genetic disease was recognized by Maimonides, who prescribes a regimen of health for all Jews that will enable them to remain healthy, since one cannot serve the Lord when one is ill (Mishneh Torah, Deot 4:1). He guarantees that anyone who follows his regimen will be healthy all his life, except for those who were born with hereditary or genetic defects (ibid. 4:20).
The Genome Project
Is the genome project an encroachment on the divine plan for this world that interferes with nature as God created it? Would genetic engineering tamper with the divine arrangement of Creation? Although one rabbi answers in the affirmative, most rabbis consider the acquisition of knowledge for the sake of finding cures for human illnesses to be divinely sanctioned, if not in fact mandated. God blessed mankind with the phrase replenish the earth and subdue it (Genesis 1:28). This phrase is interpreted by Nachmanides (Ramban) to mean that God gave man dominion over the world to use animals and insects and all creeping things for the benefit of mankind (Ramban, Genesis 1:28). To subdue the earth, according to Samson Raphael Hirsch (on Genesis 1:28), is to master, appropriate, and transform the earth and its products for human purposes. To have dominion over the fish and over the birds and over every living thing on earth (Genesis 1:28) means to use them for the benefit of mankind. The pursuit of scientific knowledge does not constitute prohibited eating from the tree of knowledge (Genesis 2:17). Whatever is good for mankind must be permissible and praiseworthy. However, good often is not pure good, but may contain dangerous elements. Although the genome project is intended to cure diseases, it has raised many concerns.
In the general introduction to his Commentary on the Mishnah, Moses Maimonides discusses the existence and purpose of all living and inanimate things in the world He clearly enunciates the thesis that the purpose of everything that God put on this earth is to serve mankind. Thus, scientific experiments on laboratory animals, during the course of medical research that might find cures for human illnesses, are sanctioned in Jewish law as legitimate utilization of animals for the benefit of mankind. However, whenever possible, pain or discomfort should be avoided or minimized in order not to transgress the prohibition in Jewish law against cruelty to animals.
King David said, "The heavens are the Lord's heavens, but the earth He has given to mankind" (Psalms 115:16), further supporting the concept that knowledge and its pursuit are legitimate activities for human beings and not considered an encroachment upon divine prerogatives. Thus, therapeutic genetic engineering and gene therapy that may result from the knowledge derived from the genome project do not undermine God's creation of the world by manipulating nature (Ramban, Leviticus 19:19). On the contrary, it is a legitimate modification of the natural order The use of scientific knowledge to benefit mankind is biblically mandated (Ramban, Genesis 1:28). The use of such knowledge to heal illness and cure disease is also allowed biblically, based on the talmudic interpretation (Baba Kamma 85a) of the phrase and heal he shall heal (Exodus 21:19), or even biblically mandated, based on Maimonides' interpretation (Mishnah Commentary, Nedarim 4:4) of the biblical obligation to restore a lost object (Deuteronomy 22:2) to include the restoration of one's lost health The healing of illness includes the use of genetically engineered medications such as insulin and various antibiotics. The cure of disease by gene therapy, if possible, is also sanctioned in Jewish law.
Many years ago, Rabbi Moshe Feinstein was asked whether 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 susceptible to nervous tension or psychological stress, and therefore, young men (below age 20) and women (below age 18) not yet contemplating marriage should not be screened for Tay-Sachs disease Finally, Rabbi Feinstein strongly condemned abortion for Tay-Sachs disease and even questioned the permissibility of the amniocentesis that proves the presence of a Tay-Sachs fetus, since amniocentesis is not without risk, albeit small.
Rabbi J. David Bleich indicates that the elimination of Tay-Sachs disease is, of course, a goal to which all concerned individuals subscribe. He points out, however, that the obligation with regard to procreation is not suspended simply because of the statistical probability that some children of the union may be deformed or abnormal. While the couple may quite properly be counseled with regard to the risks of having a Tay-Sachs child, according to Jewish law (Halachah) the failure to bear natural children is not a viable alternative. He further voices concern that if the fetus is found to have Tay-Sachs disease by prenatal testing, abortion may not be sanctioned in Jewish law. Rabbi Bleich concludes that screening programs for the detection of carriers of Tay-Sachs disease "are certainly to be encouraged." He suggests that the most propitious time for such screening is childhood or early adolescence, since early awareness of a carrier state, particularly as part of a mass screening program, is advantageous. He is critical of Rabbi Waldenberg, pointing out that the latter's permissive ruling on abortion for Tay-Sachs disease is contrary to the decisions of other contemporary rabbinic scholars, including Rabbi Feinstein.
Excerpted from Contemporary Biomedical Ethical Issues and Jewish Law by Fred Rosner Copyright © 2007 by Fred Rosner. Excerpted by permission.
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