hanging on by a FRINGColonE:el Mordechai Frizis’s members courag theeous la sresponset act of the tribe? for his country

OPEN MIKE FOR HUCKABEE SWEET SONG OF EMPATHY The presidential hopeful ON what fueled his fifteenth trip to A candid conversation with Shloime Dachs, child of a “broken home”

LIFEGUARD AT THE GENE POOL His screening program has spared thousands from the horror of his personal losses.

Now ’s Yosef Ekstein braves the stem cell frontier

ON-SITE REPORT RAMALLAHEducator and innovator IN RREALabbi Yaakov Spitzer Can thes P.tillA. form liva fiscesally Rsoundav state?Wei ssmandel’s words

familyfirst Issue 346 I 5 Adar I 5771 I February 9, 2011 Price: NY/NJ $3.99 Out of NY/NJ $4.99 Canada CAD $5.50 Israel NIS 11.90 UK £3.20 inside The gene marker's

Rabbi Yosef Ekstein of Dor Yeshorim Vowed that No Couple Would Know His Pain bride When Rabbi Yosef Ekstein’s fourth Tay-Sachs baby was born, he knew he had two options – to fall into crushing despair, or take action. “The Ribono Shel Olam knew I would bury four children before I could take my self-pity and turn it outward,” Rabbi Ekstein says. But he knew nothing about genetics or biology, couldn’t speak English, and didn’t even have a high school diploma. How did this Satmar chassid, a shochet and kashrus supervisor from Argentina, evolve into a leading expert in the field of preventative genetic research, creating an bride international screening program used by most people in shidduchim today?

34 5 Adar I 5771 2.9.11 35 QUOTES %%% Rachel Ginsberg His father, Rabbi Kalman Eliezer disease and its devastating progression, as Photos: Meir Haltovsky, Ouria Tadmor Ekstein, used to tell him, “You survived by the infant seemed perfect for the first half- a miracle. I don’t know why, but it must be year of his life. “But soon I noticed he began e spoke little English, knew nothing for a purpose.” to regress. There is nothing as horrible as about genetics, and never set foot After his mother, Pessel, crawled out of watching your child deteriorate in front of Hin a college classroom. So how the rubble of the bombed-out building with you. It began with floppy muscle tone, then did Rabbi Yosef Ekstein, a shochet from her -old infant, she hid him for several he couldn’t swallow, and soon it progressed Argentina , manage to create an international until they could plan their escape. to , paralysis, mental retardation, system that has virtually eradicated the Meanwhile, Rabbi Kalman Ekstein was and blindness.” occurrence of Tay-Sachs and other recessive hiding in a pit. Having contacted smugglers In 1965, there was no testing or diagnostic genetic illnesses common to the Ashkenazic who promised to get them over the border method available for Tay-Sachs, other than Jewish community? to Romania, Pessel and her sister — who seeing a red patch that eventually develops Today, Dor Yeshorim is a household looked like a non- and donned a cross on the retina. Finally, at age two, the now word, at least among families with around her neck — dressed little Yosef up as severely disabled child was diagnosed with -aged children. Who in the a girl (they had given him a bris and didn’t Tay-Sachs, an incurable that world looks into a prospective Rabbi Ekstein: “We looked on in horror want anyone checking) and took a train to always results in a very young death. match without first ascertaining genetic as he deteriorated and died” the border. At the border station, however, “We looked on in horror as he turned compatibility by calling in their numbers the little group realized they were being into a vegetable and died at age four.” Rabbi Ekstein is to the Dor Yeshorim hotline? But in 1983, The next child, a girl, was also afflicted nothing if not when Rabbi Ekstein first set out to prevent with the disease. “With every child born the determined. Is it because he was others from experiencing what he was so “Hashem Yisbarach suspense was horrible, waiting to see if the a war baby? painfully living through himself, people child would be healthy or not.” thought he was a dreamer at best — a has given us the ability The Eksteins had buried two children, digger of skeletons at worst. but forged ahead faithfully. The third child Maybe it was because he was a war baby to discern genetic was healthy. But the next two … upon us two “copies” of every gene, as long — born while the Budapest building where In 1983, the Eksteins’ fourth Tay-Sachs as there is only one genetic between his mother had taken shelter was being recessive disease baby was born. the two, the carrier will not be affected by bombed — that Yosef Ekstein became such “The Ribono shel Olam knew it would the mutation. a stubborn fighter, forging ahead with his compatibility. Why is take four children for me to get out of my That genetic mutation is still transmitted, program in the face of raised eyebrows and own self-pity and turn my pain outward,” however, and makes the person who receives skeptical smirks. Yet at the beginning of his this more controversial Rabbi Ekstein says. “I had two choices: it a “carrier.” As long as both parents are not personal journey, his only fight was to get than any other despair or action. It took me nearly twenty carriers, there is no danger of their child through his own pain. years to get the message. But He paid being affected by the mutation carried by The year was 1965, and Rabbi Ekstein, information we process me back with interest. Since starting Dor only one parent. However, if both parents a Satmar chassid, shochet, and head of Yeshorim, we’ve been zocheh to five more possess the same genetic mutation, their kashrus in Argentina, had just become a to consider a match?” healthy children. children are at risk of inheriting a matched father to a newborn son. How simple it These samples are the “You have to understand the culture set of mutant genes. These genetic seemed in this generation, he thought. It dividing line of tragedy then. Everyone would hide their sick can pass quietly for generations until two was nothing like the situation his parents children, especially if we were talking about carriers marry; then their children have a faced when he had been born. a genetic disease. It would put a black mark one-in-four chance of being afflicted with on the family. Who would want to do a the disease. followed by nilosh — Hungarian bounty shidduch with a genetically diseased family? Rabbi Ekstein set out to establish hunters who whispered to each other, At the time, we were living in Monroe. a protocol to prevent recessive genetic “They’re ours.” Then, when one of them I was probably the first individual in our diseases by helping matching carriers excused himself to the bathroom, the other community who came out and said, ‘I have a avoid marriage (although both carriers one fell asleep waiting, and the Ekstein trio, problem. I’m bleeding to death. Let’s make could safely marry other non-carriers). hearing the snoring, tore out of the station and sure no one else has to go through this.’ ” Rabbi Ekstein’s vision was to embark hid in the high grass until they could make on a mass screening process to provide contact with the smugglers. Rabbi Ekstein, We’re All Carriers Without genetic protection from diseases that are prevalent who was to arrive the following night, got screening, the Eksteins, and thousands among . But he also wanted to make word that the smugglers had suddenly gone of couples like them, could never have sure to safeguard individuals from the out of business, and so remained hiding in known in advance that they were carriers psychological stigma of carrier status his pit until the end of the war. for Tay-Sachs, a genetic mutation noted for knowledge, and prevent the labeling of The family was finally reunited and its frequency among Ashkenazic Jews of any person or family with carrier status. made their way to Israel, where they lived for Eastern European descent. This is because Going public with Tay-Sachs was nine years before moving to South America, it is biologically impossible for a carrier to groundbreaking in itself, and he took the where Rabbi Ekstein senior established the actually have the disease himself. However, personal risk — even though his wife kehillah in Buenos Aires. if two carriers marry, each child born will didn’t want to go public. How would the However, for the younger Rabbi have a 25 percent chance of falling ill. frum community ever go along with this Ekstein, twenty years removed from war- Truth be told, everyone is a carrier of if there were to be large-scale disclosure? torn Europe, becoming a father proved to be various genetic mutations and recessive So, with the participation and advice far from simple. lethal diseases that we’ll never be aware of leading medical experts and gedolim “For the first six months, my son seemed of — sickle-cell anemia, , from the spectrum of Torah , Dor to be thriving,” Rabbi Ekstein recounts, Tay-Sachs, spinal muscle atrophy, familial Yeshorim’s ground rules were established. describing the shock of his first Tay-Sachs dysautonomia, and , to Participants are clearly informed that the One blood test and a baby, the heart-wrenching onset of the name a few. But because our parents bestow Dor Yeshorim program does not include phone call and Tay-Sachs has virtually disappeared 36 5 Adar I 5771 2.9.11 37 information about personal carrier status; can decide who will marry who?’ But Tied to the Cord they are only informed if their prospective the minute they have a problem, they match is compatible or not. come running. Someone who tastes the Stem cell transplants might sound futuristic, but in recent liquid nitrogen billowing out when the vat is opened, but Today, Dor Yeshorim screens for fatal tragedy is no longer a critic. There was years over 100,000 of these transplants have been performed inside is life-saving potion: 3,500 samples, each one specifically or catastrophically debilitating recessive a very chashuve askan who was against successfully, to treat over 70 blood diseases such as leukemia tissue-typed and filed. genetic diseases as part of its program. me in the beginning. Then, when he was and . Umbilical-cord-blood stem cells have “We need twenty this much,” says Rabinowitz. “We Participation in the chareidi community, looking for a shidduch for his daughter, significant advantages because they are young and not yet hope to get to a point where any Jew in need can contact where dating occurs solely through the the father of the boy insisted on Dor developed, extremely viable, and don’t require a complete us and have a good chance for a match. Ten thousand stored shidduch system, hovers around 98 percent, Yeshorim, so he had no choice. patient-donor tissue match. But while the world at large is cord-blood units can save a hundred lives a year.” He says that and Tay-Sachs has been virtually eradicated “Well, it came back not compatible. benefiting from this medical breakthrough, the singular genetic Israel, a melting pot of ethnic diversity within Jewish families, from this community. The Kingsbrook So now this askan knows his daughter profiles of Jewish patients often make it impossible to find a is a good place for donors who can match the unique insular Medical Center Tay-Sachs unit, which once is a carrier of something, and he’s in match in the registries when needed. ethnic combinations of today’s Jews who need a bone marrow had a long waiting list, recently closed due to hysteria. He calls me. ‘What will be with When a relative of Rabbi Ekstein couldn’t find a match for or stem cell donor match. the success of Dor Yeshorim. my children who are already married? I a life-saving transplant, he knew what he had to do. He built a Public cord blood banking is considered better quality than never tested them. What if their spouses No One Showed Up Rabbi Ekstein are carriers?’ So I told him, those not yet Jewish cord-blood bank himself. Initially there were two centers, privately stored cord blood, although the latter has turned into has fought an uphill, sometimes vertical married you test, those already married Kehila Cord in New York and Bedomaich Chayi in ; big business. A person who stores his baby’s cord blood will battle to achieve these results. Turnout for you have bitachon.’” the cost of processing is prohibitive, and budgetary constraints pay over $1,800 for retrieval and processing, plus $125 a year the first screening in 1983 was dismal: forty- For some, the very idea of screening forced the US office to close, but the Jerusalem center is busy for storage. While Bedomaich Chayi disregards three-quarters five people came, mostly as a personal favor was confusing. Isn’t every baby, no matter processing and storing the stem-cell-rich plasma from umbilical- of the samples they receive because of inferior quality, most after efforts of pleading and door-knocking. how ill or unviable, a holy neshamah? cord blood at the rate they can afford to process. Each sample private labs don’t do a thorough check to see if the sample The next year it was up to 175 people. His Why not forgo the testing, just go ahead costs the lab $1,300 to tissue-type, process, freeze, and put is really high-quality enough (in terms of bacteria and the breakthrough came when one school agreed “In the beginning, with the shidduch, and leave the results into the registry. stem-cell count) to make freezing worthwhile. This is because to screening; and today, screening is standard up to Hashem? Doesn’t this get too Cord blood is easy to donate — it’s simply gathered after chances are minuscule that the sample will ever be used in in most religious schools, and its 80,000 calls people would say, close, they asked, to the philosophy of birth with no risk or pain and sent to the lab for processing. the first place. There is only a one-quarter of one percent a year are the first step in the initial research ‘Who is this Ekstein , making “superior” babies by Bedomaich Chayi gathers blood samples from the labor rooms chance that private stem cells will ever be retrieved for use, of a shidduch prospect. selective breeding? of Shaarei Zedek and Bikur Cholim hospitals (that’s as much because they can only be used by the person they “belong” to. Rabbi Ekstein, whose goal was to who thinks he can Rabbi Ekstein waves his hand as they can process at this time, although mothers from other Furthermore, in many cases the genetic mutation causing the spare people the pain and suffering he in dismissal. He’s been through the hospitals are constantly requesting to donate); checks the disease is already present in the cord blood that was collected knew so well, didn’t take the difficult decide who will marry excruciating pain. quality of the blood at the lab; uses only the quality samples; from that person years ago, making it useless for treating him. start personally. “This,” he says, “is why the program is separates 25cc of the plasma that contains the stem cells; and In fact, out of the hundred-plus thousand stem cell “In the beginning, people would who?’ But the minute premarital. We do not screen married people. deep-freezes the sample in a marked cassette that goes into a transplants from various sources including peripheral blood say, ‘Who is this Ekstein who thinks he We do not even screen engaged couples. By they have a problem, highly organized, computerized freezer that stores the plasma and bone marrow, more than 20,000 of these transplants that time, you’re off our radar screen. This at -188 degrees Celsius (-306 degrees Fahrenheit). have been performed using stem cells from public cord has nothing to do with whether or not a “These cells can be retained for at least twenty years,” says blood banks, while only a few dozen were performed they come running” baby should be born, chas v’shalom. This Shimi Rabinowitz, the lab’s operations manager. from private commercial banks, although they contain a is one more piece of information, a genetic The freezer looks something like a witch’s brew, with the much larger inventory. point of view, that a prospective couple can use to decide whether a shidduch should go forward. Hashem Yisbarach has given us the ability to discern genetic recessive disease compatibility. Why is this more controversial than any other information we process to consider a match?” Once you’ve been on the other side, he says, you can’t look at the one who says “anyway, it won’t happen to me” without wincing.

Call Before You Meet While the Dor Yeshorim team would like to see everyone screened before the shidduch goes anywhere, what about those couples who have been dating, are thinking about marriage (before the actual engagement), and then go for screening, only to discover that they are “incompatible”? According to Dor Yeshorim, if the prospective shidduch did not meet yet, or are not yet emotionally invested, they Walking the fine line should be able to hear they are incompatible between the right and move on to the next shidduch, which Shimi Rabinowitz and to know and the probably will be compatible. his frozen samples. “The right to stay sane cells can be retained for However, if they are already at least twenty years” emotionally invested, Dor Yeshorim offers

38 5 Adar I 5771 2.9.11 39 says that journalists love contention, that The Tragic Recessives “People try to sneak into Dor Yeshorim after private testing. “they don’t understand the issues, and they Dor Yeshorim currently tests for the following genetic mutations that This is outright gezel” write things that are incorrect, especially cause severe genetic diseases common to Jews of Ashkenazic descent: with delicate issues like these.” Tay-Sachs: The most well-known of Jewish genetic disorders. The He did agree to speak with Mishpacha, infant looks normal at birth, but at about six months, the central nervous however, and even provided a tour of system begins to deteriorate. By age two, the child can’t sit or crawl, Dor Yeshorim’s newest project, which and eventually loses his ability to swallow and breathe normally, finally is unrelated to genetic screening. It’s a collapsing into blindness, mental retardation, and paralysis, usually dying state-of-the-art public stem cell bank by age five after suffering horribly for most of his short life. called Bedomaich Chayi. The bank has : A neurodegenerative disease, where the child nothing to do with spousal compatibility, first appears normal and then begins displaying an enlarged head, but everything to do with Rabbi Ekstein’s loss of muscle control, seizures, and eventually becomes blind and own determination to apply cutting-edge paralyzed. Most die by age one, but some live in suffering until their technology toward solutions to medical teenage years. crises at all costs. Niemann-Pick Disease (A and B): Another neurodegenerative When a relative needed a stem cell transplant but no match was available, disease with symptoms beginning at about six months, including Rabbi Ekstein used his resources for a new feeding difficulty, vomiting, enlarged and liver, loss of motor skills mission: to create a pool of donor stem-cell- and poor growth. Death usually occurs by age three. rich plasma from umbilical-cord blood, so : An incurable disease that affects the central to rescreen at a severely reduced rate and that any Jew in need will be able to find nervous system, influencing blood pressure stability, motor function, and will, when asked, tell them what they were “You think this is an a match. Jews in general have limited the ability to swallow, perspire, cry, and feel pain, among other functions. incompatible for. The organization does not chances of finding a stem cell match in Eventually it affects the digestive, respiratory, and circulatory systems. give out this information to curiosity-seekers, easy thing?” Rabbi the general registries because of tissue- Today improvements have been made in the treatment protocol. but in a crisis situation, the staff spends time Ekstein is hurt. People typing compatibility. Stem cells from cord Cystic Fibrosis (CF): Manifested in serious respiratory ailments, and resources working with these cases, blood, however, only require 60 percent ongoing suffering, and frequent, lengthy hospitalizations. With proper explaining and counseling about the best and accused him of “ruining compatibility, because these cells are young, care, patients can live into their thirties, although many die as teenagers. worst-case scenarios, and lets them make naïve, and have a greater tendency to grow Males with the disease are infertile. their decision. shidduchim.” “That’s and reproduce. [See sidebar.] Fanconi Anemia Type C: Severe anemia, congenital defects in the “But that’s why we want people to call Some medical philosophers say DNA extremities, and a tendency toward cancer and leukemia. Treatment for compatibility before they meet the first when they decide to research and accompanying breakthroughs entails frequent blood transfusions. The only possibility of cure is through time,” says Rabbi Ekstein. in reproductive genetic techniques — the bone marrow or umbilical-cord stem cell transplantation. If some critics claim that Rabbi call the night before ability to see if embryos are “genetically Glycogen Storage Type A: An inability to break down glycogen, Ekstein “ruins lives” by spoiling their the l’chayim. This is compromised,” and DNA mapping of a resulting in complicated diabetes and severe digestive complications. marriage plans, he is the first to agree that person’s entire genetic makeup, including Frequently leads to liver tumors, and can be fatal. this screening program does not work why we want people risk factors for various diseases — are Bloom Syndrome: Typified by dwarfism, malignant tumors, and in the secular world, where emotional the slippery slope of modern science. mental retardation. involvement comes before basic research. to call before the Abortion, embryo destruction, and worries Mucolipidosis Type 4: A severe degenerative disease of the brain “This is like a custom-tailored suit,” he about eugenics, or selective breeding to that hampers development and causes blindness. Some patients reach says. “This is not a one-size-fits-all.” couple even meets. It rid a population of unwanted traits, are the Rabbi Ekstein says he got his degree concerns that accompany runaway research. adulthood, but never develop beyond the level of a one-year-old. in genetics at “Hardway University,” and should be a basic part Ironically, although Rabbi Ekstein is although is his preferred language one of the leaders in pushing for creative of expression (he speaks Yiddish, Spanish, of the research, like medical solutions with this new technology Hungarian, Ivrit, and now English) and he — solutions like the Bedomaich Chayi cord- looks more like a seforim store salesman any other item that’s blood bank, and isolating genetic markers to than an expert in preventative genetics, his being checked out” uncover the codes for more recessive genetic knowledge is expansive. He has served on diseases — he is almost a reactionary in medical panels, and as medical technology one area he’s dead-set against: testing for has advanced, he has been in the forefront personal dominant gene mutations that may of using DNA screening for compatibility have links to someone contracting a disease checks instead of the less reliable bio- he was determined, and so he sought out in the future. An example is the BRCA gene, medical markers. Despite his traditional people who spoke his language. He begged, which may be linked to the future onset of chassidic garb, heavy accent, and lack of he nudged, he dug, until he understood. women’s cancers. a high school diploma, Rabbi Ekstein is He began to read medical journals and “Testing is only a good thing when you viewed by top geneticists as a visionary who technical papers. Today his name is on at can have some positive result from it,” he has provided the Jewish community with a least fifteen scientific papers, either leading says. “Why add the burden of knowledge genetic screening program unmatched by or collaborating on cutting-edge research. to something you can’t do any good about? any other program in the world. So that you’ll consider removing organs and When Rabbi Ekstein began to explore The Stem Cell Frontier Rabbi other crazy things on the outside chance that his own tragedy, he knew nothing about Ekstein is hyper-focused on his mission, you’ll get sick?” genetics or biology — although he was an although he’s neither a medical professional But today’s politically correct attitude expert at the physiology of a cow. He didn’t nor a smooth talker. Actually, he’s not much insists that everyone has the right to know understand the language of the experts, and of a talker at all, and he is extremely wary everything about himself, in order to be certainly couldn’t read a medical text. But of the press, rarely granting interviews. He prepared psychologically for any event.

40 5 Adar I 5771 2.9.11 testing. This is outright gezel,” laments but that has been dropped because it has Rabbi Ekstein. With the influx of positive- been found to be often asymptomatic, tested carriers, Dor Yeshorim would simply and there is now a successful treatment become the “carrier” organization and protocol — even Israel’s Ministry of create the very stigma for participants they Health no longer recommends screening are trying to avoid. for Gaucher’s. When we started screening “If we don’t stick to this at all costs,” for it, we only saw the very difficult cases says Rabbi Ekstein, “the very foundation of because the DNA test was not yet available, the program is at risk.” and the medical world wasn’t even aware Today, with the proliferation of private that there was a more frequent, mild form agencies that people can which often didn’t even present. Once the hook into online, having only to provide a DNA test was used, we realized that we’d saliva sample, everyone can get tested and have to stop twenty shidduchim before receive their results — not just for nine one child might have a problem. And or ten mutations, but for over a hundred today there is treatment. When we started mutations that they could be carriers there was no treatment.” How catastrophic must an illness for. Rabbi Ekstein is not against testing Dor Yeshorim, and by extension Rabbi be to enter the testing panel? privately for recessive genetic mutations Ekstein himself, takes responsibility per se; he just doesn’t want them trying for telling a potential couple, “not to enter the Dor Yeshorim program after compatible.” “Prepare psychologically,” says Rabbi they find they are a carrier. “You think this is an easy thing?” Ekstein, “means drive yourself crazy.” He “We’ve said ‘not “I don’t force anyone to choose our Rabbi Ekstein is hurt. People accused him notes that much of the current literature way. I’m just being practical. Let’s say of “ruining shidduchim.” “That’s when about DNA mapping indicates a significant compatible’ 1,700 someone gets a printout of all his genetic they decide to call the night before the psychological burden placed on those who times. True, that means mutations and conditions of carrier status. l’chayim. This is why we want people learn of their carrier status. What does he do with that? Take his printout to call before the couple even meets. It This is the fine line Rabbi Ekstein is 1,700 times tragedy on the first date? The fourth date? And should should be a basic part of the research, like worried about — will readers understand the he demand the lab results from the other side any other item that’s being checked out.” difference between a person’s right to know was averted. It’s rare. and make sure they are certified?” Putting the statistics into perspective, and his right to remain sane because of his in the last twenty-eight years, how many It usually doesn’t self-imposed ignorance? This is one reason Drawing the Line For Rabbi Ekstein, prospective matches have actually been “This is not a testing he’s so adamant about Dor Yeshorim’s the lines of DNA research are clearly drawn. canceled? facility. For that I could position in not revealing any genetic happen. And when If the knowledge won’t help you, don’t do it. “We’ve said ‘not compatible’ 1,700 have opened a lab” information to the participant, although it does happen it’s a But if it will help, turn over the world. times. True, that means 1,700 times tragedy the information is available. This is a main So when Rabbi Ekstein learned that was averted. That’s 3,400 families. It’s rare. point of contention among Dor Yeshorim’s salvation. But each Dr. Berish Rubin — chairman of the It usually doesn’t happen. And when it does have to double- and triple-check even diseases have virtually been eradicated in detractors. Does withholding available Department of Biological Sciences at happen it’s a salvation. But each time I the data entry. It means we need to take the community for those who utilize the information contravene the client’s civil time I cry. It means I’ve Fordham University — had expertise in the cry. It means I’ve stopped a shidduch.” multiple precautions to make sure there program, those genes are never erased. rights, that he has the “right to know” all the field of molecular biology, he didn’t let Dr. “But you should know, for me, are no mistakes. One mistake could mean And so, says Rabbi Ekstein, “My goal results contained in those vials of blood? stopped a shidduch” Rubin off the hook until he agreed to search saying ‘compatible’ is an even bigger an irreparable family tragedy.” doesn’t go by numbers. This is going For someone on the cutting edge of for a genetic basis for familial dysautonomia responsibility. I take this burden on my Rabbi Ekstein’s original forty-five to continue until Mashiach, as long as DNA research, and the new morality (FD), an often fatal “Jewish” genetic disease shoulders hundreds of times a . It do-good volunteers have mushroomed into people are doing shidduchim.” n notwithstanding, his reaction is surprisingly affecting the central nervous system, with a means we have to have siyata d’Shmaya a database of over 320,000. But although the unequivocal: “No.” carrier frequency equal to that of Tay-Sachs. and be 100 percent accurate. It means we incidence of Tay-Sachs and other genetic Photo placement courtesy of modern diagnostic laboratory First of all, he explains that unlike a with a positive carrier. Rabbi Ekstein was in touch with numerous private screening lab, those blood samples For this reason, Rabbi Ekstein, the Dor families whose children tragically died of you gave don’t belong to you. You are not Yeshorim board, and its rabbinic advisors FD, and who could not find shidduchim for paying for a blood test. You are a participant laid down another iron-clad rule. Gripes or their healthy children because of the stigma. in a broad program which includes screening, not, absolutely no one who has done private Within a few months, Dr. Rubin discovered research, counseling, volunteers and staff all testing through another source may avail the FD-causing mutations, and Rabbi over the world, and compatibility checking themselves of Dor Yesharim’s services. Ekstein wasted no time in expanding his to prevent tragedies. He outlines two main reasons: If a person testing panel to include this fatal condition. “This is not a testing facility. For that, I knows from outside testing that he’s a carrier His was the first organization in the world to could have opened a lab.” for a particular disease, then he would know use FD in its screening. In Dor Yeshorim, Rabbi Ekstein the carrier status (positive or negative) of Still, where does Dor Yeshorim draw stands firm. Confidentiality must never be the person he called about — some girl the line? How catastrophic must an illness compromised. And it’s not only because suggested as a shidduch — compromising be to enter the testing panel, where a many people not well versed in genetics the original premise that everyone’s privacy negative compatibility result would mean would find it traumatic to cope with the must be protected. Furthermore, a person the canceling of a shidduch? knowledge that they are carriers (which has who has tested privately will only run to “We will only screen for extremely absolutely no bearing on their own health or Dor Yeshorim for one reason — he tested debilitating disorders like cystic fibrosis even on the health of their children as long as positive, and needs to know the status of his or Bloom Syndrome, or fatal diseases like they don’t marry someone “incompatible”), prospective shidduch. Tay-Sachs and Canavan,” Rabbi Ekstein but also because there are many people who “People do their own thing and then try explains. “We are not looking for a ‘perfect’ — ignorant or not — will reject a shidduch to sneak into Dor Yesharim after private gene pool. We used to test for Gaucher’s,

42 5 Adar I 5771 2.9.11