An Overview of Halakhic Issues Pertaining to Jewish Genetic Disorders

Rabbi James M. Gordon, J.D.

I. Introduction

A main service that the Chicago Center for Jewish Genetic Disorders (the “Center”) provides is to educate the Jewish community about the importance of testing for the occurrence of Jewish genetic disorders and, where appropriate, to seek genetic counseling. The Rabbis of the Chicagoland community are important partners in helping to facilitate the success of the Center. It is imperative that Rabbis are proactive in educating couples who are considering having children. To assist in these efforts, in July, 2001, information packets were sent jointly by The Chicago Board of Rabbis (“CBR”) and the Chicago Center for Jewish Genetic Disorders to CBR members as well as by the Chicago Rabbinical Council (“CRC”) and the Center to CRC members.

There are many Halakhic and other religious issues regarding genetic testing. This article is intended to provide a cursory survey of potential Halakhic and other religious issues associated with genetic screening. It is by no means exhaustive of all of the issues and clearly does not delve into the necessary depth warranted by each issue. To facilitate further examination, relevant sources have been provided. The reader is strongly encouraged to examine these sources and to speak with their Posek or Rabbinic advisor for further clarification.

This article will address two categories of Halakhic and religious issues: (1) general principles in Jewish medical ethics — issues which apply to genetics as well as to other areas of medical ethics; and (2) issues more specific to genetic testing/screening. Included at the end of this article is a bibliography of recommended articles. Although the primary target audience of this article is Rabbis, this website is accessible to the general public, therefore English translations have been provided for many Hebrew terms.

II. General Principles

    • Autonomy vs. G-d Owns Our Bodies

In secular medical ethics, a premium is placed upon (self-) autonomy. A patient makes his or her decisions based solely upon their own self-interests; after all, we are the owners of our own bodies. According to Jewish tradition, G-d owns everything in the world including the bodies of every human being. G-d lends each person a body to use during his/her lifetime with the understanding that it will be returned to Him at the time of death. When we make decisions regarding such topics as medical care, end-of-life treatments, organ transplants, abortion and genetic screening, the basis of one’s decision should be what is proper according to Jewish tradition. This may not always coincide with what an individual feels is in his or her own best interests.

(For further insights please see: Genesis 14:19,22; Exodus 20:11; Leviticus 25:23,42,55; Deuteronomy 10:14; Ezekiel 18:4; Psalms 24:1; Nedarim 40a, Ran Commentary; Mishneh Torah, Hil. Sanhedrin 18:6, Radbaz Commentary; Shostak, pp. 64-65; Dorff, pp. 2-3; Resnicoff, footnote #8).

    • Pikuach Nefesh (Preservation of Life)

“v’khawl ha-m’kayem nefesh achat b’Yisrael, ma-aleh ahlav Ha-Katuv k’ilu kiyem ohlam maleh.” (” . . . to save one life is equivalent to saving the entire world.” – – Sanhedrin 37a).

This Talmudic principle teaches that the value and sanctity of human life is boundless. Accordingly, we are allowed to set aside Torah law to save a person’s life, with three exceptions: idolatry (Avodat Elilim), forbidden sexual acts (Gilui Arayot) and murder (Sh’fikhat Damim) (Mishneh Torah, Hil. Y’sodei Ha-Torah 5:2; see also: Breitowitz, The Right to Die: A Halakhic Approach).

Timely genetic screening and counseling, can prevent the birth of children who would be born into a life of great pain and suffering and who would die prematurely. It can also spare parents great mental anguish.

    • We must take good care of our health

Deuteronomy 4:15 teaches: “V’nishmartem m’od l’nafshoteikhem” – “And you shall diligently preserve your souls.” Jewish tradition mandates that we must take proper care of our health and avoid danger and injury. Laws regarding endangering one’s life are more stringent than those regarding ritual prohibitions – –“sakanta chamira m’issura.” (Chullin 10a; Shulchan Arukh, Orach Chayim 173:2; Shulchan Arukh, Yoreh Deah 116:5 gloss; see also: Dorff, pp. 2-3).

Having timely genetic screening and counseling, is a way of preserving the mental health of prospective parents.

    • The Duty to Heal (Ourselves and Others)

Although G-d is our ultimate healer (e.g., Exodus 15:26; Deuteronomy 32:39; Jeremiah 30:17; Psalms 103:3), humankind is also given license to heal (See: Exodus 21:19-20/Bava Kama 85a; Deuteronomy 22:2/Sanhedrin 73a/Rambam, Commentary to Mishnah, Nedarim 4:4; Leviticus 19:18/Ramban; see also: Jakobovitz, pp. 1-23; Feldman, pp. 15-21; Dorff, pp. 3-4). Physicians have a special obligation to heal because of their training (Shulchan Arukh, Yoreh Deah 336:1).

Receiving timely genetic screening and counseling are ways that the patient participates with medical professionals in the healing process.

    • Using Advanced Technology to Sustain Life is Not an Interference with G-d’s Will

We learn from the Ramban’s (Nachmanides) interpretation of “v’kivshua” (“and subdue it”) (Genesis 1:28), that humankind is given the license to make positive use of all of G-d’s creations.

Using advanced technology, such as genetic screening devices, is not an interference with G-d’s Will. Rather, it is a positive usage of G-d’s creations.

    • The Role of the Rabbi (Posek vs. Advisor)

Ideally, there should be three parties involved in medical decisions: the patient, the doctor/genetic counselor and a qualified Rabbi.

The couple’s Rabbi can play a critical role in their decision-making process, either as an advisor on Halakhic and other religious matters or as a Posek, one who renders binding decisions.

(For further insights, please see: Wein; Breitowitz, How a Rabbi Decides a Medical Halacha Issue ).

III. Halakhic Issues More Specific to Genetic Screening

    • Establishing Screening Programs

In 1973/5733, in response to an inquiry by the Association of Orthodox Jewish Scientists (“AOJS”) seeking guidance on Halakhic parameters for Tay-Sachs screening, Rav Moshe Feinstein published a teshuva (responsum), which reads, in part:

“. . . 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.” (Iggrot Moshe, Even Ha-Ezer, Part 4, #10 – English translation found in Rosner, Pioneers in Jewish Medical Ethics, p. 89).

Some of the issues upon which Rav Moshe’s teshuva touch, either directly or indirectly, include: the commandment to procreate (Mitzvat P’ria U-R’via), potential marriage restrictions, confidentiality (Sh’mirat Ha-Lashon/Lashon Ha-Rah), anxiety (Teruf Ha-Daat) and abortion. These Halakhic issues will be addressed shortly in a summary fashion.

The largest community-based screening program for Jewish genetic diseases which was created and is maintained under Halakhic parameters is Chevra Dor Yesharim Committee for Prevention of Jewish Genetic Diseases (“Dor Yesharim”). This New York-based organization, with a representation in the Chicago Jewish medical community, provides a confidential genetic screening program for certain Jewish genetic disorders. Participants, who are by and large from the Orthodox community, are tested at around the age of 18. Couples who are contemplating marriage notify Dor Yesharim of their interest. Oftentimes, this occurs before the couple’s first date. The couple is notified later whether or not their union could possibly result in the birth of children with genetic disorders (i.e., that both prospective husband and wife are carriers). A confirmed incompatible couple is strongly discouraged from getting married to each other. By not getting married, such couples are not faced with such difficult decisions as what to do with a fetus that is afflicted with a genetic disorder.

    • Mitzvat P’riya U-R’viya (Procreation)

A married man is obligated to fulfill the Mitzvah of P’riya U-R’viya. According to the Shulchan Arukh (Even Ha-Ezer 1:5), a man observes this mitzvah, when he fathers a son and a daughter.

Is the Mitzvah of P’riya U-R’viya suspended for a married couple where both parents are carriers of a Jewish genetic disorder? According to Rabbi J. David Bleich, this mitzvah is not suspended when both spouses are Tay-Sachs carriers (Bleich, pp. 109-115; see also: Rosner, Judaism, Genetic Screening and Genetic Therapy, p. 7).

    • Potential Marriage Restrictions

According to the Talmud (Yevamot 64b) and codes (Mishneh Torah, Hil. Issurei Biah 21:30; Shulchan Arukh, Even Ha-Ezer 2:7), a man is prohibited from marrying a women who has lepers or epileptics in her family. Rashi expands this category to include any hereditary disease.

A program like Dor Yesharim is highly successful in preventing marriages between carriers from occurring because it interrupts relationships at a point when they still can be effectively stopped before they develop into marriage. The Dor Yeshorim clients are mainly from a segment of the Orthodox community where men and women only date if their relationship will potentially lead to marriage (“Takhlis“).

In other communities, since couples usually get screened either after their engagement or after they are married – – but before they have children, terminating a relationship is a far more challenging matter.

    • Confidentiality – – Sh’mirat HaLashon/Lashon HaRah

Based upon the laws of Sh’mirat Ha-Lashon and the prohibitions of Lashon Ha-ra and Rekhilut (Psalms 34:14; Leviticus 19:16; Yoma 4b; Sanhedrin 31a; Mishneh Torah, Hilkhot Deot 7:2; Chafetz Chayim), with rare exceptions, information regarding a person’s carrier status should not be shared with others.

Dor Yesharim, for example, only informs participants of their carrier status when both members of the proposed union are carriers. If only one is a carrier, they inform the inquiring couple, that their union will not produce any children with Jewish genetic disorders. If a person is aware of his/her carrier status, this can instill a great anxiety in the carrier which may cause him/her to restrict or perhaps even completely stop their participation in the dating process. Knowledge by others of a person’s carrier status can also lead to a stigma being placed on other members of the carrier’s family.

Dr. Fred Rosner notes that a carrier of a potential lethal genetic disorder, must share that information with a prospective spouse. (Rosner, Judaism, Genetic Screening and Genetic Therapy, p. 8).

    • Potential Employment, Insurance & Housing Discrimination

If knowledge of an individual’s carrier status is inappropriately released this could lead to potential employment, insurance and housing discrimination against the carrier. In Jewish tradition it is very important that we provide every opportunity for a Jew to earn a livelihood and preserve his or her assets. In this regard our Sages teach: “Ha-Torah chasa ahl mamonam shel Yisrael” (“The Torah spares the money of a Jew”- – Chullin 49b).

    • Teruf Ha-Daat (An Unsettled Mind vs. Peace of Mind)

Jewish tradition recognizes the importance of minimizing the emotional burden that too much or too little information can place on an individual. Some people like to know before they begin a relationship whether or not they are a carrier of a genetic disorder. Others would rather not know until their relationship is at more serious stage. Regarding Tefuf Ha-Daat, Dr. Rosner notes, in part, “It is not clear whether Judaism sanctions genetic screening for diseases for which no effective treatment yet exists” (Rosner, Judaism, Genetic Screening and Genetic Therapy, p. 8).

    • Amniocentesis, Abortion, and Pre-implantation Screening

When a couple who are both carriers of a genetic disorder get married, they subject themselves to the risk of creating an affected fetus. Results from an amniocentesis can inform the couple whether or not their baby is affected with the particular genetic disorder.

Although an amniocentesis which reveals that the fetus is not diseased will provide relief from anxiety (Teruf Ha-Daat), not all Rabbinic authorities endorse amniocentesis under all conditions. In 1973, the AOJS, an organization whose Posek was Rav Moshe Feinstein, proclaimed in a statement: “The Association feels that screening of married couples or those with marriages imminent and who are not committed to disruption of their mutual marital commitment, were both partners discovered to be Tay-Sachs carriers, is unwise, again because virtually the only consequences would be abortion or a childless marriage” (Levin, p. 260).

Abortion on demand is not condoned by leading Rabbinic authorities. Aborting a fetus afflicted with Tay-Sachs or certain other disorders is sanctioned by some authorities. A venerable Posek who permits the abortion of a Tay-Sachs fetus under certain conditions is Rabbi Eliezer Yehuda Waldenberg (See: Tzitz Eliezer vol. 9, #51:3; Tzitz Eliezer, vol. 13 #102; Rosner, Judaism, Genetic Screening and Genetic Therapy, p.7; Rosner, Pioneers in Jewish Medical Ethics, pp. 179-180). However, Rabbi J. David Bleich and others are critical of Rabbi Waldenberg’s leniencies in this area (Bleich, pp. 109-115).

Dr. Rosner points out that an Halakhically valid alternative for a couple who are both carriers is to have their in vitro fertilized zygotes screened and then to have only healthy zygotes implanted in the mother’s uterus. Any diseased zygotes can be discarded, “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” (Rosner, Judaism, Genetic Screening and Genetic Therapy, p.8).

IV. Conclusion and Bibliography

This article highlights some of the Halakhic issues related to the screening of Jewish genetic disorders. Rabbis are urged to take every opportunity to encourage couples contemplating marriage to be screened.

For further insights regarding the Halakhic treatment of genetic issues, the reader may wish to consult the following secondary sources which were cited in this article:

Bleich, J. David. 1977. Contemporary Halakhic Problems Volume I.
     New York: KTAV Press.
Breitowitz, Yitzchok. 1996. “The Right to Die: A Halakhic
     “How a Rabbi Decides a Medical Halacha Issue.”
Dorff, Elliot N. 1996. The Jewish Tradition: Religious Beliefs and
     Health Care Decisions
. Chicago: Park Ridge Center for the
     Study of Health, Faith, and Ethics.
Feldman, David M. 1986. Health and Medicine in the Jewish
. New York: Crossroad.
Jakobovitz, Immanuel. 1975. Jewish Medical Ethics. New York:
     Bloch Publishing Company.
Levin, Mark. 1999. “Screening Jews and Genes: A Consideration
     of the Ethics of Genetic Screening Within the Jewish Community:
     Challenges and Responses.” Genetic Testing 3,
     no. 2: 207-213.
Resnicoff, Steven H. 1998-99. “Jewish Law Perspectives on
     Suicide and Physician-Assisted Dying.” Journal of Law & Religion
     XIII (2): 289-349.
Rosner, Fred. 2000. ” Judaism, Genetic Screening and Genetic
     1997. Pioneers in Jewish Medical Ethics. New Jersey: Jason Aronson, Inc.
     1993. Medicine and Jewish Law Volume II. New Jersey: Jason Aronson, Inc.
Shostak, Zev. 1981. “Ethical Guidelines for Treatment of the Dying
     Elderly.” The Journal of Halacha 22: 62-86.
Wein, Berel. 1993. “Rabbinic Decision Making in Medical Practice:
     The Rabbi’s Perspective.” In Rosner, Medicine and Jewish Law
     Volume II
, 49-55.