DOR YESHORIM

DOR YESHORIM
Committee for Prevention of Jewish Genetic Diseases

Genetics…What You May Not Know

Are you aware that one in every four individuals of Ashkenazi Jewish descent is a carrier for a recessive genetic disease??? And that if two carriers for the same disease marry, they risk a one in four chance - in each pregnancy - of producing children afflicted with a fatal and debilitating disease?

For the past 23 years, the non-profit organization Dor Yeshorim – Committee for the Prevention of Jewish Genetic Diseases – has protected couples from the anguish of producing genetically diseased children that results from genetic incompatibility through their program of confidential premarital testing in high schools, seminaries, yeshivas, colleges, synagogues and affiliated laboratories all over the world.

History of Dor Yeshorim (DY)

DY was established in 1983, after its founder and Executive Director, Rabbi Josef Eckstein, suffered the devastating losses of four children to Tay-Sachs. He resolved to use his tragic experiences to help prevent other Jewish families from suffering the same heartbreak. Through sheer will, perseverance and Divine guidance, Dor Yeshorim steadily gained the respect and endorsement of the medical and genetics communities as well as rabbinical authorities and lay leaders in communities of many diverse backgrounds in the U.S. and abroad.

The Dor Yeshorim Mission

DY began its mission for prevention by testing for Tay-Sachs disease. Over the years, as new reliable tests have become available, they have been added to the DY testing panel. Today, Dor Yeshorim tests for ten recessive genetic diseases that include Tay-Sachs, Cystic Fibrosis, Familial Dysautonomia, Canavan Disease, Glycogen Storage Disease Type 1, Bloom Syndrome, Fanconi Anemia Type C, Niemann Pick, Mucolipdosis Type IV and Gaucher Disease (by request only). DY endeavors to provide the latest technology in testing in a manner that is tailored to the needs of the observant Jewish community and that does not accompany social stigma or psychological damage to individuals. The ultimate goal is that no parent suffers the loss of a child to a recessive genetic disease for which there is an available, reliable test. (DY is also directly involved with ongoing research for additional diseases such as Nemaline Myapathy, Usher Syndrome I and III, Hyperinsulinism, Maple Syrup Urine Disease and Non Syndromatic Hearing Deficiency).

The cornerstone of the DY program is its unique system of complete confidentiality, in order to protect individuals from the psychological burden of knowledge and of others knowing one’s carrier status. Therefore, the program operates with coded ID numbers instead of names - and carrier status is not divulged to individuals, except in the event that a potential match is genetically incompatible. When a prospective couple is found to be incompatible, both parties are informed of the genetic disease for which they are carriers and provided counseling to advise them of the risks involved should the couple choose to marry, and to assist them with integrating this disconcerting information.

How the DY Program Works

Participants take a simple blood test at a participating laboratory or testing site. At the time of testing, individuals fill out an information card and consent to include date of birth, gender, telephone number(s), ethnic origin (Ashkenazi, Sephardi, Convert, Non-Jewish origin), ancestors’ countries of origin and Social Security number (optional). Ethnic origin determines the type of testing needed. Participants are assigned a DY coded identification number.

When a marriage match is being contemplated, ID numbers are exchanged and a call is made to DY’s automated hotline for a compatibility check. The recommended time to check for compatibility is before the first date, in order to avoid emotional hardship resulting from breakup of an already established relationship in the event the match is genetically incompatible.

Parties are called back at telephone number(s) provided by participants at the time of testing (to ensure that results are given to the parties themselves only, for security and confidentiality purposes). Results are provided by a DY representative in the form of “Compatible” or “Incompatible”. When a couple is diagnosed as both being carriers for the same disease, they are informed of their carrier status for that disease and offered counseling.

A Word About Gaucher’s Disease (This test is done by request only)

Gaucher’s Disease, when detected, usually becomes apparent in childhood or early adulthood, when patients initially develop an enlarged spleen and/or hematological and orthopedic problems. The carrier rate for Gaucher’s is 1 out of 14 individuals of Askhenazi Jewish descent, significantly more frequent than the other fatal and debilitating diseases on the DY testing panel, however manifests significant symptoms in relatively few cases. Ceredase treatment (enzyme replacement) is available for some patients with a severe form of Gaucher’s but is not a cure. The cost of Ceredase treatment is in excess of $200,000 per year.

Patients with Gaucher’s Disease generally are asymptomatic or experience mild symptoms and many individuals in fact, live with the disease without ever knowing it. Even in the rare instance when the disease is manifested in a severe form, treatment is available and patients can lead normal and productive lives.

Testing the general population (and all DY participants) for Gaucher’s would serve only to create social stigma and discrimination to carriers and those affected, without the benefits that would come with a diagnosis, as asymptomatic or mild symptom patients are not candidates for treatment and report functioning similar to normal individuals who are not affected. For this reason, coupled with the likelihood of many more marriage matches being eliminated due to the high carrier rate, DY offers the Gaucher’s test upon request only.

Dor Yeshorim Today

DY operates with the support of a Board of Trustees and community leaders and is endorsed by prominentRabbonim in the U.S., Israel and Europe. DY’s medical advisory board includes genetics experts and physicians from Columbia University, Albert Einstein College of Medicine, New York University Medical Center, National Hospital for Neurology in London, England and Hadassah University Hospital in Jerusalem, Israel.

DY has evolved as an important resource for families with concerns about genetic conditions that may be inherited or have reappeared in their families. DY is also a significant participant in medical research and investigative efforts by facilitating contact between afflicted families and researchers. Additionally, limited research protocols are being considered for other recessive, genetic diseases.

DY is funded through a variety of resources. Testing fees cover less than half of the actual cost to process blood samples for all of the diseases on the DY testing panel. Donations and sponsorships are always welcome.

Genetic screenings through DY are offered ONLY to unmarried and unengaged individuals who have not previously tested elsewhere. This protocol was implemented in order to avoid complicated situations that arise for already engaged or married couples who are presented with genetic incompatibility and to protect the confidentiality of all participants.

To find a participating testing site near you or to request a brochure, call Dor Yeshorim at (718) 384-6060.

NYU Langone Medical Center 
Human Genetic Program
Have you been tested?

What is a genetic disease?

For most of the traits in our bodies, we have two copies of each gene, one inherited from the mother and one from the father. As the result of a change in the gene (mutation), it may not work in the proper way. Some diseases occur when a person has a change in only one gene. Other diseases (called "recessive") occur when both genes have changed.

What is a carrier?

A carrier is a person who has a change in one of the copies of a gene for a recessive disease. Because changes are required in both copies to produce the disease, the person remains well and unaware of his or her carrier status. However, when two carriers have a child, the child has a 25% chance (risk) of having the genetic disease. When a carrier has a child with a person who is not a carrier, the child is not at risk for the disease.

Why should I get screened?

Genetic screening is the process to identify changes in a person’s chromosomes, genes or proteins i.e. to find out whether a person is a carrier for a specific disease. Every ethnicity and racial group has certain inherited disorders that occur more frequently among them. Ashkenazi Jews have many such disorders, such as Tay-Sachs and Canavan diseases, which are fatal. Others are extremely devastating.

Every Ashkenazi Jews has a 1 in 4 chance of being a carrier for a genetic disease. With this knowledge people can avoid marrying someone who is a carrier for the same disease as them. By getting tested, you can ensure that your children will not suffer from these diseases.

For couples where both partners are carriers for the same diseases, they can take appropriate action such as prenatal testing and pre-implantation genetic diagnosis (PGD). They should speak with a knowledgeable genetics professional before taking action.

When should I get screened?

The time to get screened is now, before you anticipate needing the results. Know your carrier status so you can take measures to act accordingly. Remember, being a carrier means that you are completely healthy and are not at risk for developing the disease. In addition, if your partner is not a carrier or is a carrier for a different disease then your child is not at risk.

How can I get screened?

Please contact the NYU Human Genetics Program at 212-263-5746, and let them know that you are a currently a student. Our offices are located at 550 1st Ave, New York, NY 10016 (at 33rd street ). You can also consult your personal physician or another genetics center. Genetic screening is performed in most major hospitals and medical centers.

What does the actual screening entail?

You will first meet with a genetic counselor for 15 minutes to discuss your testing. Then a small blood sample is collected and is sent to a lab for testing.

What diseases am I getting screened for?

NYU Langone tests for: Bloom syndrome, Canavan disease, Tay-Sachs disease, cystic fibrosis, glycogen storage disease 1a, familial dysautonomia, familial hyperinsulinism, Fanconi anemia, Gaucher disease, Fragile X syndrome, Maple syrup urine disease, Niemann-Pick disease, & mucolipidosis IV.

***For more information about these diseases visit our website at

http://genetics.med.nyu.edu

Cost: Many insurance plans cover the full cost of testing. NYU Langone accepts the following insurance plans: Aetna/US Healthcare, Cigna, GHI, Empire BC/BS, Empire Plan, Healthnet, Local 1199, Multiplan, Oxford , and United Healthcare. Sign up at http://genetics.med.nyu.edu and list your specific insurance plan to determine if it is accepted by NYU Langone. If it is not, please contact us for more information.

How will I learn my test results?

The results of carrier testing are usually available two to three weeks from when the specimen was collected and if you are found to be a carrier, a genetic counselor will call you.

Confidentiality of test results

The test results are your confidential information. They will not be disclosed to others, (including your partner, your insurance carrier, or any other physician who was the physician who ordered the test) without your prior consent.

Religious or Ethical Concerns? Please consult your local religious authority.

More Information

If you have any questions about any of this information or would like to schedule an appointment, please feel free to contact us.

Human Genetics Program
NYU Langone Medical Center 
550 First Avenue , Room MSB 136
New York, NY 10016 
Phone: 212-263-5746
Fax: 212-263-7590

Shidduch

Shidduchim According to Halachah

It is a mitzvah to arrange a shidduch[1] [colloq: a match] between a man and a woman for the object of matrimony.[2] It is permitted to arrange a shidduch on Shabbos,[3] and if necessary, it is even permitted to discuss the financial arrangements on Shabbos.[4]

        The poskim debate whether or not it is permitted to arrange or promote ashidduch between non-observant Jews who will not observe even the minimum halachic standards of family purity. Some permit doing so only for a professional shadchan whose livelihood depends on making shidduchim, while others do not permit it even in that case.[5] But if the shidduch is made for the purposes of potential kiruv or in order to avoid the tragic alternative of intermarriage, then the shidduch may be proposed and followed through regardless of payment. Even a professional shadchan, however, is advised by the poskim not to get involved in arranging a marriage between non-Jews.[6]

Question: During the shidduch process, what type of information may or may not be withheld from the other party?

Discussion: It is prohibited for either party in a prospective match to give false information or to withhold pertinent information about themselves.[7] In certain cases, withholding or falsifying information could result in the invalidation of a marriage.[8]

        The poskim give some examples of information that may not be withheld in a prospective match [and which, if withheld, may invalidate a marriage]: serious physical or mental illness,[9] infertility,[10] accurate financial status,[11] lack of religious observance,[12] previous marital status,[13] previous illicit relationships,[14] conversion,[15] adoption.[16]

        One is not required to divulge a deficiency which most people do not consider to be an impediment, such as a minor illness,[17] a physical weakness or a minor blemish in one's lineage.[18] Similarly, it is not required to divulge a transgression in the distant past for which the sinner has repented.[19]

        Since it is often difficult to gauge and judge minor drawbacks versus major deficiencies, a rav must always be consulted.

Question: When being asked for information about a prospective shidduch, what type of information may be shared with others?

Discussion: An individual who is asked for [or is aware of[20]] information about ashidduch must divulge what he knows regarding a “major deficiency,” as detailed above. One who deliberately withholds such information transgresses the prohibition of lifnei iver lo sitein michshol and other Biblical prohibitions.[21]

        Detrimental information about a shidduch may be conveyed only with the proper intention—for the benefit of one of the parties, not in revenge or out of spite. Even then, the information may only be relayed when[22]:

1. The condition is serious.
2. The condition has not been exaggerated.
3. There is a reasonable chance that the information will be accepted and acted upon. If it is likely to be ignored, it is prohibited to relay it.

One who is unsure if a particular point of information is a major deficiency or if the above conditions have been met should consult a rav before divulging or withholding any information.

Question: Is it a requirement to pay a shadchan for his services or is it just proper etiquette?

Discussion: As with any other business transaction, a shadchan must be paid a fee for arranging a shidduch.[23] It makes no difference if the shadchan was engaged by one of the parties or if he volunteered his services or even if the shadchan is non-professional; in all cases the shadchan must be paid for his services.[24] The shadchan may petition a beis dinto force the parties to pay his fee.[25]

        The amount to be paid is divided equally between the two sides, even if the shadchanspent more time with one of them.[26] At the shadchan’s discretion, he may charge only one of the parties involved half of the going rate and forgo the other half. He may not, however, charge more than half to one side, even if the other side is poor or for some reason refuses to pay.[27] The shadchan may forgo payment altogether, in which case there is no compelling reason to pay him.[28]

        Although the obligation to pay is the bride’s and groom’s, it has become customary for the parents to pay.[29] In light of this, if the parents fail to pay, some poskim rule there is no obligation for the bride and groom to pay the shadchan.[30]

        If the match is not completed, the shadchan need not be paid, even though he invested a great deal of time and effort in pursuing the match.[31]

        The poskim debate the division of payments in a situation where more than oneshadchan is involved, or when the match began with one shadchan and ended with another. Whenever there is a dispute, a rav should be consulted, since there are many details involved and no two cases are alike.

        A shadchan whose fee is outstanding should not be a witness to the marriage ceremony.[32]

Question: Is there a set amount of money that one must pay a shadchan?

Discussion: The amount to be paid to the shadchan is based on the customary local fee.[33] Once the standard fee is agreed upon, the shadchan may not ask for additional compensation to cover special expenses that he may have incurred in arranging the shidduch.

        Our custom is to pay the shadchan immediately after the shidduch is completed.[34] Even if the shidduch is broken later, the shadchan does not have to return his fee[35] as long as he did not give erroneous information which led to the termination of theshidduch.[36]

---

[1]         The word shidduch is Aramaic for “peaceful” or “tranquil” (see Targum on Sefer Shoftim 3:11), referring to the peacefulness which a woman senses when she finds her match and establishes her home (Ran, Shabbos 12a). Others maintain that the word shidduch means “to bind or tie together” (Aruch).

[2]         Shulchan ha-Eizer 3:1, based on the Midrash Rabbah, Tzav 8:1, that Hashem himself arranges matches. See also Chikrei Lev, C.M. 135.

[3]         O.C. 306:6.

[4]         Ketzos ha-Shulchan 107:8. See Kaf ha-Chayim 306:50 who says that whenever possible, it is best to delay discussing finances until after Shabbos.

[5]         See Teshuvos Meishiv Davar 2:32, Teshuvos Maharam Brisk 1:82 and Yismach Lev, vol. 1, pg. 20, quoting Chazon Ish and Rav C. Kanievsky. See also Igros Moshe, E.H. 4:87-1.

[6]         Be'er Heitev, Y.D. 2:15 and Darchei Teshuvah 154:6, quoting Chavos Yair 185. See alsoChelkas Yaakov 1:174.

[7]         Sefer Chasidim 507.

[8]         See Igros Moshe, E.H. 1:79-80.

[9]         E.H. 39:5; Igros Moshe, E.H. 4:73-2.

[10] Otzar ha-Poskim 39:7. See Kehilos Yaakov, Yevamos 38 and ruling of Rav Y.S. Elyashiv (quoted in Nishmas Avraham, vol. 5, pg. 118).

[11] Teshuvos Chasam Sofer, E.H. 72, quoted in Pischei Teshuvah, E.H. 38:14.

[12] Chafetz Chayim, Hilchos Rechilus, Klal 9, tziyur 3:6, 11.

[13] Noda b'Yehudah 2:50, quoted in Pischei Teshuvah, E.H. 39:4.

[14] Igros Moshe, O.C. 4:118; Minchas Yitzchak 3:116. See, however, Maharsham 7:152.

[15] Minchas Yitzchak 7:90; Tzitz Eliezer (quoted in Nishmas Avraham, E.H. pg. 252).

[16] Minchas Yitzchak 5:44.

[17] Such as an ulcer; Rav Y. Zilberstein (Emek Halachah, Asyah, pg. 160).

[18] Chavos Yair 120. See Teshuvos Knei Bosem 1:121 and Nishmas Avraham E.H., pg. 26, for an elaboration. See also Titein Emes l'Yaakov, pg. 85, who quotes a dispute between contemporaryposkim as to whether it is permitted to slightly "adjust" the age of bride or groom, such as from age 20 to age 19, etc.

[19]         Minchas Yitzchak 6:139. Such information, therefore, may not be repeated by others when they are asked for information, ibid.

[20]         Tzitz Eliezer 16:4.

[21]         Chafetz Chayim, Hilchos Rechilus, Klal  9:1, tziyur 2:3. See also Pischei Teshuvah, O.C. 156 and Chelkas Yaakov 3:136. See also Practical Medical Halachah, 3rd edition, pg. 166, quoting an oral ruling by Rav M. Feinstein that a disability which may impact negatively on an individual’s functioning as a spouse or as a parent must be revealed.

[22]         Chafetz Chayim, Hilchos Rechilus, Klal 9:2.

[23]         Rama, C.M. 87:39 and 185:10.

[24]         Beiur ha-Gra, ibid. See Teshuvos Maharash Engel 3:15.

[25]         Rama, C.M. 87:39 and 185:10.

[26]         Erech Shai, E.H. 50.

[27]         Beis Yitzchak, E.H. 115; Halichos Yisrael 20.

[28]         Rav Akiva Eiger, C.M. 185; Pischei Teshuvah, E.H. 50:16, who reject the mistaken notion that a shadchan must be paid even if he forgoes his payment.

[29]         Avnei Nezer C.M. 36. See Halichos Yisrael 3.

[30]         Erech Shai C.M. 185. See Yismach Lev, vol. 1, pg. 22, for other opinions.

[31]         Beis Yosef, C.M. 185.

[32]         Otzar ha-Poskim 42:45-15; Rav Y. Kamenetsky (oral ruling, quoted in Apiryon l'Shelomo, pg. 40). See also Yismach Lev, vol. 1, pg. 108, quoting Rav C. Kanievsky.

[33]         Pischei Teshuvah, E.H. 50:16. If there is no clear custom as to the amount a shadchanreceives, a rav should be consulted.

[34]         Aruch ha-Shulchan, E.H. 50:42; Beis Yitzchak 1:115; Halichos Yisrael 4; Pischei Choshen, sechirus, pg. 337. When a shadchan does not get paid on time, the Biblical prohibition of delayed payment (bal talin) may apply; see Halichos Yisrael 1-2. See also Yismach Lev, vol. 1, pg. 23, quoting Rav C. Kanievsky

[35]         Aruch ha-Shulchan, E.H. 50:42. But in a locality where the shadchan is customarily paid after the wedding, and the couple in question do not get married, the shadchan does not have to be paid; see Chut Shani, Shabbos, vol. 3, pg. 243.

[36]         Levushei Mordechai C.M. 15, quoted in Pischei Choshen, ibid. See Halichos Yisrael 11, who discusses whether the shadchan should be paid if the shidduch was broken because of information of which the shadchan was unaware.