Genetic Screening Causes Controversy

Dor Yeshorim, an international genetic testing program operating within the Jewish community, was brought to Yeshiva University by YCSC on Tuesday March 10, giving students an opportunity to utilize its services. The program is aimed at couples who wish to get married, and determines their genetic compatibility by screening the blood of each individual and testing for evidence of unexpressed (recessive) genetic diseases.

Dor Yeshorim was started in 1985 by Rabbi Joseph Eckstein, who had four children born with Tay-Sachs disease, an uncurable degenerative disease primarily found in Jews of Eastern European Ashkenazi descent. The organization has since been endorsed by many rabbinic authorities including Rabbi Elya Svei, Rabbi Shmuel Yackov Weinberg, and Rabbi Shmuel Berenbaum. As of now, Dor Yeshorim tests for four diseases that are prevalent in the Jewish community: Tay-Sachs, Cystic Fibrosis, Canavan Disease, and Fanconi Anemia.

If a man and a woman are both carriers of the genes that cause a particular disease, there is a 25 percent chance that their offspring will express the symptoms of that disease. If one of the couple tests negative, the child will not have the symptoms for that disease, regardless of the other parent’s genetic status.

The testing process of Dor Yeshorim is regarded by many as somewhat unusual: A couple has blood taken and each receives a unique identification number used to receive the results over the phone. Individual results are not disclosed. The only information provided is whether the two specific numbers are compatible. Frances Berkwits, M.S., a genetic counselor for Dor Yeshorim, claims the reason that individual results are not revealed is because "It is often difficult for people to cope with individual carrier status, and we do this out of concern for those identified as carriers."

The price, which many students regard as high, is $120 per individual tested (YU students received a $20 discount). Berkwits claims that the entire cost is used to pay the laboratories that Dor Yeshorim has contracted to carry out the actual testing on the blood. She says, "The thing with putting an amount on our testing is that next week the labs might raise the prices. Because of the large volume of blood samples we take, we have negotiated with fully qualified laboratories at a discounted fee of about $100 per specimen."

According to the Hematology Department of Temple University, the actual testing that Dor Yeshorim requires costs a lab an estimated $35 per specimen if carried out in bulk. Mass genetic screening has long been a subject of great debate among both doctors and ethicists around the world. Rabbi Moshe Dovid Tendler, Rosh Yeshiva, Professor of Biology, and Professor of Jewish Medical Ethics, posted a letter entitled "The Planned Genetic Screening at Yeshiva University: An Appeal to Logic" around campus. In it, he disagreed with when the tests are taken, writing that "The ‘secret’ testing by ‘Dor Yeshorim’ might have once been of value and may yet be useful in the Chasidic communities who have little contact with modern genetic information. It does not make sense for the Yeshiva College and Stern College communities."

R’ Tendler was referring to the Chasidic practice of arranging marriages, something that is extremely rare in the YU community. When arranging a match, it is logical to test both individuals for compatibility after deciding on the shidduch. If the man and women are incompatible the arrangement can be broken with no harm to either party. However, in a dating setting, individuals create emotional ties before deciding to get married. Therefore, testing after a couple have decided to get married can lead to harsh emotional and ethical dilemmas if the test results indicate that the partners are incompatible.

Rabbi Tendler also disagreed with the method of providing results. He writes "The purpose of a genetic test is to acquire information. Any student interested in taking these tests should be provided with the results of the test. A negative result removes all concerns when beginning the search for a husband or wife."

In response to Rabbi Tendler’s letter, Sruli Tannenbaum, YCSC President, said "While I certainly respect Rabbi Tendler’s beliefs, there are a number of other rabbeim who endorse Dor Yeshorim. YCSC felt that they were doing the students a service by making an organization like Dor Yeshorim available. We didn’t force students to utilize their services, we simply gave them a choice."

Rabbi Tendler feels that the rabbis who endorsed Dor Yeshorim did not fully evaluate the possible consequences of mass genetic screening with increased likelihood of finding genetic defects, both on the patient and on the community. He asked, "Have the rabbeim studied enough science to realize why most ethicists are opposed to mass genetic screening?" Rabbi Tendler expressed concern that finding a genetic defect in a man or woman "can lead to discrimination by insurance companies, employers, and others looking to be married."

Further Rabbi Tendler said, "There is much debate in the medical ethics profession as to the wisdom of mass screening…The introduction of this program into Yeshiva University gives our imprimatur before the decision to do so received the careful analysis demanded."

Many of the students who got tested by Dor Yeshorim were not happy with the cost, or the fact that they would not be told their individual carrier status. Daniel Erlich, a RIETS student said, "I think it’s annoying. I only came here because it was convenient, I was going to go somewhere else." Kovi Smolack, a JSS/SSSB Senior said "I don’t think it makes sense not to give each person his or her results if they [Dor Yeshorim] have it right in front of them. It’s not like they are saving us any emotional strife."

It is known that Dor Yeshorim has extended its genetic testing to include two more diseases without the recommendation of the scientific community or the world at large. In an age of rapidly advancing genetic technology in which almost anything seems possible, the question Rabbi Tendler poses is "Where do we stop?"

SYNOPSIS OF DISEASES TESTED BY DOR YESHORIM

Tay-Sachs disease is disproportionately present within the Ashkenazic Jewish community - about one in every thirty American Jews carries the gene. Children with Tay-Sachs lack an enzyme that is necessary for breaking down certain fatty substances in the brain and nerve cells. These fatty substances build up and gradually destroy the brain and nerve cells, until the entire central nervous system stops working. Death usually occurs by age five.

Cystic Fibrosis is an inherited metabolic disorder the chief symptom of which is the production of thick, sticky mucus that clogs the respiratory and gastrointestinal tracts. There is an extremely high prevalence of Cystic Fibrosis within the Ashkenazic community.

Canavan Disease, which effects the central nervous system, is marked by degeneration of the brain. The carrier rate for the disease within the Jewish community is one in thirty-seven. Infants born with Canavan may appear normal at birth, with symptoms appearing in early infancy. Characteristic features include inability to support the head, seizures, spasticity, and enlargement of the head. Eventually, blindness and severe mental retardation set in. The life expectancy of patients with this disease vary; some children die in the first years of life, while others suffer into their teens.

Fanconi Anemia causes progressive bone marrow failure, a variety of limb and organ defects, short stature, and hyperpigmentation (dark skin color). These patients also report a high occurrence of cancer or leukemia. Life expectancy is eight to twelve years and the carrier rate in the Ashkenazic community has been estimated at one in seventy-five.