Blood Matters Page 19
In its first year, Dor Yeshorim convinced all of forty-five young people to be tested—and “they were people who felt bad because of Rabbi Ekstein’s personal story.” Katzenstein smiled. He himself came to work at Dor Yeshorim in 1993, ran the operation for three and a half years, and has remained on the board since. He was the man Rabbi Ekstein put forth to inform me on the one hand and to keep me away from the organization’s offices on the other.
A Jewish real estate family subsidized the organization at first. The family insisted that Dor Yeshorim charge for the test—mostly to ensure that young people place at least some value on their Dor Yeshorim cards. The charge was five dollars—a tiny fraction of the cost of the test. The organization worked out of a one-bedroom apartment in Williamsburg and shipped its samples via car service—to someone who lived near the lab and would hand-deliver them. Incredibly, all the precautions and controls of Rabbi Ekstein’s invention were in place even at this informal stage of the organization’s existence: Every shipment contained control specimens, every vial of blood had a backup, and every result was entered twice. There were printouts of the database, too, so that Rabbi Ekstein, who did not use a computer, could thumb through the printouts to find the eight-digit number he needed when he answered the office phone in the evenings or on Sundays.
By the second year of Dor Yeshorim’s existence, several rabbis had endorsed the program and the number of tests grew to 250. Over the next twenty years, Dor Yeshorim screened 170,000 people. Of that number, 700 couples tested “incompatible,” which meant that 1,400 people learned that they carried a defective gene. The roughly 17,000 young people who are tested each year represent 90 percent of the students in participating schools (Jews of Sephardic descent and converts probably account for a majority of the remaining 10 percent, making the number of holdouts negligible).
As of this writing, Dor Yeshorim was testing for genes that cause ten recessive diseases: Tay-Sachs, cystic fibrosis, familial dysautonomia, Canavan disease, glycogen storage disease Type I, Fanconi’s anemia Type C, Bloom syndrome, Niemann-Pick, Mucolipidosis Type IV, and Gaucher’s disease. Four of these diseases—Tay-Sachs, Canavan, Fanconi’s anemia, and Niemann-Pick—kill in childhood. Mucolipidosis Type IV patients may live to middle age but are invariably severely mentally retarded. Bloom syndrome patients are extraordinarily susceptible to many kinds of cancer, which is what often kills them at or before middle age. But cystic fibrosis, which was the second disease Dor Yeshorim added to its panel, is trickier. In the early 1990s, when Dor Yeshorim was sorting the “Ashkenazi” mutations from a long list of mutations that cause this relatively common genetic condition, cystic fibrosis was a disease whose victims died in their teens. A dozen years later, it had become a manageable disorder with a life expectancy reaching into the thirties, forties, and perhaps beyond—albeit at great cost, and requiring constant commitment. Familial dysautonomia, a systemic disorder whose victims used to die young of pneumonia, requires a similar sort of maintenance regime of medication and physical therapy—but affected individuals are now living well into adulthood. Early diagnosis and proper treatment, including a special diet, has allowed children affected with glycogen storage disease Type 1 to become reasonably healthy adults. Finally, Gaucher’s disease, an enzyme deficiency, varies greatly, and does so unpredictably: Some people’s symptoms are very mild, while others’ are debilitating. Dor Yeshorim resolves this issue by offering testing for Gaucher’s disease only by request, which means that only people who have reason to suspect they are carriers will likely ask for it. That may be a self-selecting group: The relatives of a very mildly symptomatic person would presumably be less likely to worry than the relatives of someone who was severely disabled.
Speaking to a New York Times reporter in 1993, Rabbi Ekstein actually argued that testing for Gaucher’s was even more useful to the potential couple than testing for a less ambiguously horrible disease. “With Tay-Sachs, there may be ethical reason to abort,” he said. “But there is no ethical reason to abort a Gaucher’s baby.” Hence an affected couple would probably raise several disabled children. Therapeutic abortion is not generally an option for the Orthodox, but some rabbis—who, in the Jewish tradition, are entitled to resolve such issues—may take some arguments into consideration and make some allowances in some cases. The traditional view is that a fetus is not a human life before the age of forty days, which makes early abortion not a murder but a onetime violation of the order to be fruitful and multiply. Practicing birth control, on the other hand, would be a systematic abdication of the responsibility to multiply, and is therefore not an option for Dor Yeshorim couples.
Dor Yeshorim’s stated position is that it will test only for recessive disorders that are severely debilitating or fatal. Depending on one’s definition of severe disability and one’s understanding of life span, that may or may not be true of cystic fibrosis, familial dysautonomia, or even Bloom Syndrome. After all, Huntington’s disease or BRCA1–related cancers also often end lives in great suffering around middle age, but since these disorders are dominant, testing for them would put Dor Yeshorim in the position of marking certain people as entirely unmarriageable, which might correspond to the letter of Jewish law but would never go over in a modern community, even one as antimodern as the Hasids. So why does Dor Yeshorim test for Bloom and cystic fibrosis? Its booklet skirts the issue by stating that patients have “a significantly shortened life span with great pain and suffering,” which again begs the questions of how short is short and how great is great. For most people who are tested by Dor Yeshorim, this will never be an issue because they will not be in the position of being a carrier dating another carrier. But roughly one in six hundred and seventy-six couples will learn they may have a child with cystic fibrosis. Dor Yeshorim will do them the favor of perhaps exaggerating the potential disability without discussing the possibility that the child might lead a normal life at an expense and effort that a family with seven or ten or twelve children could not bear. They could, of course, do their own research. They could even forgo Dor Yeshorim altogether and seek genetic testing and counseling at a hospital. But that would mean taking on the full burden of knowledge and decision.
“The Hasidic community are very much followers of what the Hasidic rabbis and leaders suggest.” Rabbi Katzenstein was still explaining the Jews and Dor Yeshorim to me. His office phone kept ringing, his cell phone kept buzzing, his e-mail program kept binging its notifications, and he kept talking. “It doesn’t mean they are sheep, but they’ll certainly consider something. And Dor Yeshorim got the endorsement of many, many of the leading rabbis of the generation, the previous generation, because it’s been in business since ’84 or something. Then there is what we call the yeshivish community,” Katzenstein went on. “I’m from that segment, meaning, probably wearing hats but not as Hasidic. Many of us go to college. I graduated from City College. Likelihood is, they’ll become some sort of professional—you know, an accountant—or do things like storekeeper, that kind of stuff.” Dor Yeshorim had done well in this community, both because it was well organized—virtually all girls attended private Jewish high schools and virtually all boys, rabbinical seminaries—and because this community did not permit social dating except as arranged by their families, through meticulous research. This was where Miriam came from.
“Within the yeshivish community, many of them will read the Times, listen to the radio,” continued Katzenstein. By “radio” he meant an AM news station. “Although many of them will not have TVs. The next segment, the Modern Orthodox, many of them will have TVs. And they’ll differ slightly in dress.” Just then a young man appeared in the open door of Katzenstein’s office. He was rolling a cart piled with overstuffed manila envelopes, and he wanted to discuss the cost of sending them first-class. He was wearing pressed jeans, a crewneck sweater, and a knit yarmulke. This, Katzenstein pointed out, was a classic Modern Orthodox appearance. There, in the gap between Katzenstein’s white shirt, black pants, and black y
armulke, and the young man’s collegiate dress and knit yarmulke, lay a slight but key difference in attitude. There were fewer givens in the life of the Modern Orthodox. Or, as Katzenstein put it, without a hint of derision or envy, “That community is more likely to make decisions for themselves. And that’s the challenge: to sell them on the concept of not getting their own results.”
A challenge indeed, considering that the most outspoken Jewish opponent of Dor Yeshorim was actually teaching medical ethics at Yeshiva University, the brain trust of Modern Orthodoxy in New York City. Moshe Dovid Tendler was trained both in Talmudic law and in microbiology, and he was a fairly consistent advocate of medical progress, including embryonic stem-cell research and research cloning. So he criticized Dor Yeshorim for its old-world approach. “My grandparents were born in America,” he said. “The American ethical and moral values are very important to me. The idea that Dor Yeshorim has genetic information and refuses to share it with the person it belongs to is unfair, irrational, and almost anti-American. If you submit blood, you should be able to have the results.” The argument was fragile—after all, anyone who wanted to have his complete results could obtain them elsewhere, and Dor Yeshorim never knew the identities of people whose genetic information it held—but it summed up the suspicions of the more modern among the Orthodox.
In the spring of 2006 Dor Yeshorim undertook another effort to sell itself to the Modern Orthodox community. “Don’t Wait Until It’s Too Late,” screamed flyers posted around Yeshiva University. “It has happened to people here at YU,” the flyer added in smaller print. “Don’t let it happen to you.” Whether “too late” referred to the birth of a sick child or to that stage in the dating process when finding out that the couple were “not compatible” would cause heartache, was unclear, perhaps intentionally so. The flyer offered a special price of one hundred dollars to Yeshiva University students—an almost 20 percent discount. Students discussed the flyer online. “I know many people with various genetic related diseases and none of them nor their parents are sorry about their existence,” wrote one student blogger. “I wonder if any couples who have suffered tragedies due to genetic disease would say they would not have gotten married.... The Dor Yeshorim craze has become a bit fad—especially as a new rite of passage for coming of age Bais Yakov girls.” The last sentence referred to a girls’ high school in Brooklyn.
Dor Yeshorim activists may have derived some satisfaction from the blogger’s referring to the organization as both a “fad” and a “rite of passage,” but the rest of the comment summed up the problem the program faced among the Modern Orthodox. A student calling himself QJew commented, “Why do anonymous Dor Yeshorim instead of going to a hospital and getting a full list of all possibilities?”
Given the chance, Dor Yeshorim would answer: Because you won’t, or you will wait until it gets late in the game. And because you will have good reason for procrastinating: because the “full list of the possibilities” is too hard to bear, when it actually contains possibilities.
“One theory is that the more educated believe they have the tools to deal with self-knowledge of carrier status,” rabbis Ekstein and Katzenstein wrote in an article they prepared for a Jewish journal. “In reality, even the most sophisticated of individuals, being human, have the same difficulty using intellect to dominate emotions. A good example of this phenomenon is the physician who recently called the Dor Yeshorim office to indignantly exclaim that ‘it cannot be that my son is a carrier!’ For when it comes to oneself and one’s family, science is left at the office.”
To bolster their point, the rabbis cited a long-term study showing that people who learned of their carrier status experienced anxiety, embarrassment, and hopelessness. The parents of noncarriers often opposed their children’s marriages to carriers, even though, medically speaking, no one had anything to fear.
“People want to know their results as long as they are a noncarrier,” explained Rabbi Katzenstein. “Once they are a carrier, they may not be so eager to learn their results. And people believe, before they are tested, the same way that people buy a lottery ticket—they believe they are going to win. But there are those who are definitely carriers and don’t know about it. And then suddenly they are faced with that burden of knowledge, the potential stigma and all sorts of other issues, which, if they can be spared of that, why not. You don’t have to be quote-unquote know-nothing Hasid in order to have stigma and psychological trauma. I’m not saying the person is devastated, but it can present problems. Why advise people if they don’t need to know?”
***
One day in the early 1990s two short men in white shirts and black hats showed up on the doorstep of a DNA-testing laboratory in Framingham, Massachusetts. They wanted a tour. If the director of the lab, a tall blond woman named Barbara Handelin, welcomed them politely, this was a function of her good upbringing and not of any genuine desire to see Rabbi Josef Ekstein and Rabbi Howard Katzenstein of Dor Yeshorim. As Handelin recalled it when she talked to me a dozen years later, she had told Rabbi Ekstein on the phone, “With all due respect, you have to understand that the way you are doing genetics testing, you break some basic tenets of my world. Like full disclosure.” She laughed. “I also said, ‘It’s not clear to me that you really are doing informed consent before testing.’” If this was really the way she phrased her reservations—and that seems likely—that, too, was a function of her good manners, because what she really meant to say was that the way Dor Yeshorim conducted its business was anathema to geneticists, whose basic principles were: never test minors; obtain full informed consent; tell the patient everything you learn but never tell him what to do.
But Barbara Handelin ran one of the few commercial laboratories offering Tay-Sachs carrier testing, and Rabbi Ekstein was by this time ordering thousands of such tests a year and was looking to drop one of his two labs, which had failed too many of his random-control tests. In business terms, they were made for each other, so Handelin gave the rabbis a tour of her operation. Then they gave her a tour of theirs. They shook hands. They became friends: After finding out that Handelin, who was of Finnish extraction, was married to a Jewish man, Rabbi Ekstein took to sending her Israeli matzo every Passover. “They kind of took me on as their pet project, I think.” He also sent her his papers for review—for by this time the man who could not use a phone book was publishing papers on genetics.
So how did Handelin, who was a geneticist and an ethicist by training, put to rest her reservations about positively everything Dor Yeshorim did? “I went to schools, heard them talk about testing with the students, at the yeshiva—or is there a different name for the girls’ school?—anyway, after spending all that time there talking to Rabbi Ekstein and staff, seeing how they conduct themselves. They demonstrated to me that they were operating by a set of rules and a set of beliefs that at their core are good and noble—so they are different from ones that I grew up with professionally. In the end I said, ‘It’s very clear that you are preventing great suffering.’ And that the way they are doing it works for them.”
What makes it work? “It is the absolute comfort with the fact that they put off what many cultures would consider to be very private individual decisions—they are very comfortable with putting that off to a greater community and a greater God, actually. You say, ‘Well, I give up my inclination to make my own choice about my spouse to a greater system, or a greater good.’”
So it was that a greater good and a greater God got momentarily conflated in conversation, and this seemed appropriate. In the Orthodox tradition, adherence to Jewish law as originally interpreted is held to be the greater good. Not marrying a person with whom one might bear sick children is fealty to Jewish law and is therefore the greater good. The role of the greater God in the making of children is also clearly described in the Talmud. The man provides the white (sperm), which yields bones, sinews, nails, the brain, and the white of the eye. The woman provides the red (menstrual blood), which yields skin, fle
sh, blood, hair, and the black of the eye. God provides the spirit, the soul, the beauty of features, the sight of the eyes, the hearing of the ears, the speech of the mouth, the ability to move the hands and to walk with the feet, the understanding and discernment. One might conclude that where a child is deprived of sight, hearing, speech, movement, understanding, and discernment—as children with Tay-Sachs, Canavan, and Niemann-Pick certainly are—God has declined to do His part. Dor Yeshorim’s testing provides a peek at which couples will have these God-forsaken children.
The information we gain from genetic testing has a way of filling us with awe and a sense of having touched the forbidden: knowledge of the invisible and the intangible, and, more important, knowledge of the future. This is why the field of medical genetics has produced so many rules—though there are those who would argue that DNA testing is just another diagnostic tool and requires special treatment to the same extent as, say, the use of X-rays, ultrasound, or magnetic resonance imaging, all of which show us what we could not previously see (including the very early, previously invisible stages of human life). The rules that surround genetic testing are counterintuitive: with their focus on counseling and full disclosure, they mandate the dissemination of knowledge, not the protection of it. The guiding principle of Dor Yeshorim’s work—Do not share information unless absolutely necessary—corresponds much more apparently to the dread with which genetics can fill its subjects and practitioners. Indeed, the more disorders appeared on Dor Yeshorim’s menu—the greater the volume of information a young person might potentially receive—the more sense the policy made.