ANT KATZ with TABLET

An office sits on a humble corner on Wythe Avenue in Williamsburg, a Brooklyn stronghold for hipsters and Hasidim alike. Above a locked and graffitied metal security gate is a weathered sign, its gold letters scratched and peeling. “Dor Yeshorim: Committee for Prevention of Jewish Genetic Diseases,” it reads.

It’s unclear if anyone works there and whether or not the office is now just an idle space below closed-curtained apartment windows. The organization operates quietly, some would even say secretively: Phone numbers linked to Dor Yeshorim are automated, its website outdated and often unclickable, and its services little-known to those outside the Orthodox world.

According to a 29 December article in TABLETMAG.com, the Brooklyn-based organisation, which now offers Jewish genetic testing across the United States, Canada, Israel, and Europe, works to eliminate any chance that two carriers of the same genetic disease will even date, avoiding the heartache of having to abandon a progressing relationship, or worse, having a child with a fatal or debilitating genetic disorder.

Matchmaking & preventative health

Described as both a matchmaking service and a preventative health organisation, Dor Yeshorim provides an anonymous medium for clients to check compatibility. “You have reached Dor Yeshorim, the internationally recognised programme for the prevention of Jewish genetic diseases,” answers the hotline’s automated male voice. “To submit a request for compatibility, press 1. To check compatibility, you will need to submit both the male and female’s nine-digit Dor Yeshorim identification number and both their dates and months of birth, not the year of birth,” the robotic voice instructs.

Since Dor Yeshorim’s founding in 1983, numerous Jewish genetic testing services have emerged worldwide. Secular Jews might choose to get screened through their physician’s office or at a hospital-based programme. New York City’s Mount Sinai, NYU, Columbia, and Beth Israel hospitals all have medical genetics departments that offer testing.
There are also community and nonprofit screening programmes, as well as commercial labs. As genetic science advances, screening and access to genetic data have become easier and more affordable for the general population. But Dor Yeshorim differs, in one important way: Those tested never find out their results.

The only information provided is whether a pair is compatible – meaning that the two individuals are not carriers of a mutation for the same disease. If a boy and girl are incompatible, Dor Yeshorim indicates that continuing the relationship is “not advisable” and offers genetic counselling. Meanwhile, everyone’s test results remain locked in a confidential database.

Confidentiality byproduct of stigmatisation

Such stringent confidentiality is the byproduct of a community’s longstanding stigmatisation of not only the carriers of genetic diseases but also their families. Carriers of a recessive mutation for a disease are unaffected and perfectly healthy. But when two carriers of the same disease reproduce, the combination can be life-threatening: Their offspring have a 1 in 4 chance of inheriting the disease. So, even healthy siblings, viewed as potential carriers (siblings of a carrier have a 50 per cent chance of also being a carrier), are considered less marriageable.

Among 19 devastating genetic diseases more common
among Ashkenazi Jewry: Tay-Sachs, cystic fibrosis,
familial dysautonomia, & Niemann-Pick disease

Dor Yeshorim’s founding father, Rabbi Josef Ekstein, experienced the carrier stigma first-hand when four of his 10 children died of Tay-Sachs, a fatal inherited neurological disorder. Ekstein worried that his healthy children would fall victim to their community’s unremitting stigma and never find partners.

Because of his family’s struggle, Ekstein sought the development of confidential screening in the Orthodox community and worked with geneticists to conduct the first tests for high-schoolers at Mount Sinai Medical Centre in the early 1980s, testing only for Tay-Sachs at the time. Ekstein wanted Dor Yeshorim to not only prevent Tay-Sachs disease by averting marriages between carriers, but also provide carriers with anonymity. No-one would ever be informed of carrier status – someone else’s or their own.

With funding from private donors and guidance from genetic counsellors, Ekstein’s design took flight. A small staff operated out of the Wythe Avenue office and administered group screenings at yeshivas and schools. Within a decade, there were 67 couples that chose not to marry after discovering through Dor Yeshorim they were incompatible. Still the director today, Ekstein defends Dor Yeshorim’s decision to withhold test results; it is his community’s answer to the stigmatisation attached to carriers of genetic conditions.

Halachah encourages mitzvah of having children

“There’s a strong potential for people saying things like, ‘Oh my G-d, I would never date that person. They’re a carrier,’ ” explained Yehudi Meshchaninov of Crown Heights, a Chabad rabbi. Meshchaninov, 27, who wears a wispy, unkempt beard, blended in among the bewhiskered Brooklynites and scholarly millennials at Park Slope’s Tea Lounge, save for a kippa on his head and knotted fringes, or tzitzit, dangling from beneath his blue button-down.

But as a Chasid, Meshchaninov has a unique approach to dating shaped by his commitment to the Jewish religious law, or halacha, that encourages the mitzvah of having children – and lots of them. “Be fruitful and multiply”, the first mitzvah in the Torah, is a commandment that inevitably hastens and distinguishes the Orthodox dating process. As Meshchaninov explained, common practice for Chasidic Jews is to date between two and four months before marrying and to have between five and 10 children.

Meshchaninov is currently looking for someone to marry, and for him, Dor Yeshorim is a “no-brainer”. He was screened at age 19 and has an ID number to match with prospective partners if there is even the slightest chance of a relationship.

In more conservative pockets of Orthodox Judaism, young adults will seek a shidduch – a match made by the parents or a matchmaker, or shadchan. Today, Dor Yeshorim, Hebrew for “upright generation”, is an integral fixture in the shidduch system. Since Orthodox Jews date for marriage purposes only – “There’s no hooking up, there’s no making out,” said Meshchaninov – there’s often no sense in waiting to determine genetic compatibility.

‘Oh, BTW, what’s your Dor Yeshorim number?’

“It’s like, ‘OK, are you available on Wednesday? Am I available on Wednesday? Great. Where should I pick you up? Oh, by the way, what’s your Dor Yeshorim number? Let’s call in the numbers before Wednesday,’ ” he explained.

Meshchaninov was beaming, his eyes smiling through the café’s dim lights. He had had a promising second date the night before, and just beneath the rabbi’s serene wisdom and cucumber-cool veneer was something simple and vulnerable: a boy excited about a girl. The pair had exchanged Dor Yeshorim numbers via text before meeting for the first time and they were in the clear. “Get it done with early, early on when you’re not emotionally attached,” advised Meshchaninov,

“You don’t want to be in a situation where you fall in love with someone and it’s not a match and you’re both carriers.”

In the age of digital dating and compatibility algorithms, dialling a hotline to determine compatibility isn’t so far-fetched. But in the 1980s, Dor Yeshorim was an innovative matchmaking vehicle. The organisation’s mission took flight quickly: During its first year, Dor Yeshorim tested 45 young adults, charging under $30 per screening.

Now tests 20 000 a year

Today, Dor Yeshorim’s impact spans Orthodox communities around the world. The service continues to offer affordable genetic testing to 20 000 people worldwide each year, at around $200 per screening – steadily chipping away at its hefty goal of eliminating Tay-Sachs. As of 2012, the yearly incidence of Tay-Sachs in the Jewish community in the United States and Canada had dropped considerably: from between 30 and 40 children to between three and six. Dor Yeshorim reports that over 3 500 families have been “spared the agony of having a child with a recessive genetic disease.”

Though Dor Yeshorim is embraced within its community, the organization has faced a torrent of criticism from some secular Jews and medical ethicists. Opponents insist that everyone has a right to know their most personal health data and to consider alternatives such as preconception testing (screening prior to having children) or pre-implantation genetic diagnosis (PGD), which involves implanting only embryos that test negative for genetic conditions. The Dor Yeshorim approach, they argue, threatens personal autonomy and removes the option for young adults to meet and love freely.

But for Meshchaninov, locking away genetic information and tossing the key is an individual sacrifice made for the greater good of the Orthodox community. “It’s definitely paternalistic. There’s no question,” he said. “Dor Yeshorim sees it as the best way to safeguard everyone’s interest. Yeah, as an individual you might feel a little limited. We navigate the line between individual autonomy and public good.”

Clinical geneticist Dr Kurt Hirschhorn, who helped to establish the Hastings Centre for Bioethics in 1969, was asked to collaborate with rabbis on the development of Dor Yeshorim. At first it was “clearly a no-no”, he said, explaining that the organisation eliminated personal choice for young adults.

Orthodox understood that knowledge is power

“We wanted to discourage avoiding marriages.” However, Hirschhorn now accepts Dor Yeshorim’s confidential testing as a well-designed system, respected within its specific religious community. “The value is that there’s a large population that agrees with this approach,” he said. “And that’s their privilege.”

In 2006, Estie Rose, now 28, was a student at Stern College for Women of Yeshiva University when Dor Yeshorim representatives came to her class to administer voluntary blood tests. The tests would determine whether a young adult was a carrier for a range of genetic diseases, some of them devastating, that are more common in the Ashkenazi Jewish population, among them Tay-Sachs, cystic fibrosis, familial dysautonomia, and Niemann-Pick disease.

Rose is now a genetic counsellor for the Programme for Jewish Genetic Health of Yeshiva University and Montefiore Medical Centre/Albert Einstein College of Medicine in New York. Working in a field that champions openness and support for choice, she admits her views on screening confidentiality have evolved since she first used Dor Yeshorim in 2006.

 “The modern Orthodox community is shifting gears to a more open testing model because we believe that knowledge is power,” she said. “If you know you’re a carrier, you can disclose that information to your family members.”

‘We all should work hard to break this stigma’

As a genetic counsellor, Rose advocates for dialogue, sharing of health information, and candid discussion of options in the Jewish community. “I find that some people may be holding back genetic information because they feel that there is a stigma or shame surrounding genetic carriers,” Rose wrote for Chabad.org, the Orthodox learning site.
“We all should work hard to break this stigma and make it more comfortable for people to have discussions about genetic diseases. Even if you don’t usually talk about these things, I want to remind you that genetics is a family matter, whether we like it or not. Siblings and parents share half of your genetic material!”

 “Although it’s a very well-supported programme in the community, there are pockets of individuals who do want to have their data,” said Randi Zinberg, a secular Jewish genetic counsellor at Mount Sinai. She also suggested that the breakthroughs in genetic technology may complicate finding compatibility.

“As we know there’s a genetic component to more and more diseases, it’s going to be very hard to get a perfect match.”

Dedicated her life to raising awareness

When Shari Ungerleider’s first son, Evan, was 13 months old, she received the devastating news that he was affected with Tay-Sachs disease. She and her husband watched as the disease gained momentum, causing seizures, breathing problems, hearing loss, and blindness.

Evan died before he turned 5.

Now project co-ordinator at the Jewish Genetic Disease Consortium and president of the National Tay-Sachs and Allied Diseases Association, she has since dedicated her life to raising awareness about carrier screening for Jews, and even non-Jews, who often are either dating or married. Her organisation advocates preconception testing rather than pre-marital. “My goal is to make sure that all at-risk couples are tested or screened,” she said. “And that means Jewish and interfaith couples.”

For Ungerleider, carrier status should not be kept secret. “It’s important information to share with immediate and extended family members,” she said. “Carrier status is something that’s passed down from generation to generation and not just among your parents and siblings, but it could be nieces, nephews, aunts, uncles, cousins.”

Advocacy led to establishment of JScreen 

Meira Katz had no idea that her family was at risk for mucolipidosis type 4 (ML4), an incurable neurological disease, until her niece Eden was diagnosed at 18 months of age. This meant that Katz’s sister was a carrier of a mutation in the ML4 gene, which put Meira at 50 per cent risk for also being a carrier.

Eden’s parents, Caroline and Randy Gold, were tested by separate doctors and not screened for the full panel of 19 Jewish genetic diseases. If screening had been more extensive, the Golds would have understood their risks before having children and had immediate answers to their concerns about Eden’s development. Instead, Eden underwent two surgeries and saw multiple doctors before her diagnosis.

“Sadly, my sister and brother-in-law hit the genetic lottery,” said Katz. “Had they known they were both carriers, there would have been no surgeries or stress of waiting for the diagnosis.”

The Golds, vocal advocates for standardised genetic testing, eventually established JScreen in 2013, a national public health initiative that provides at-home education and carrier screening for Jews as well as the general population.

After her niece’s diagnosis, Katz sought screening through Mount Sinai Hospital. “I wasn’t dating anyone at the time. I just wanted to know,” she said. Results revealed that Katz was indeed a carrier for ML4, as well as for Gaucher disease. She wasn’t surprised. “I jokingly said to my mom: ‘Look, I’m not adopted!’ ” recalled Katz. Years later, she was in a serious relationship and decided to get updated testing through JScreen – her sister and brother-in-law’s brainchild – which offers testing for a more extensive list of genetic diseases.

Ashkenazim’s increased risk of 19 diseases

As genetic science advances, new diseases are regularly added to the testing panel; some are potentially fatal, and others are less threatening. While Dor Yeshorim currently screens for nine of the most debilitating diseases, JScreen offers a panel of 40 diseases common in the Jewish population (including the 19 that Ashkenazi Jews are at increased risk for) as well as an expanded panel of 80 diseases relevant to the general population. For $99, participants register for a kit online, collect a saliva sample at home, and send to JScreen for analysis.

JScreen advertises convenient and affordable genetic testing. When Katz was first tested, the process cost her $1 500 and required two days off of work and a schlep to the Upper East Side. Through JScreen, education and testing take place at home. Unlike Dor Yeshorim, JScreen informs its participants of carrier status: Two to three weeks after testing, genetic counsellors connect with individuals or couples via Skype or over the phone to explain results, risks, and options.

 “I think this is everyone’s favourite part of the process,” said JScreen outreach coordinator Hillary Kener. “It gives everyone peace of mind.” For Katz, the dialogue with her JScreen genetic counsellor “alleviated a lot of fears.”

Fighting for transparency in genetics

JScreen tested about 2 500 patients in its first year, including people previously tested through Dor Yeshorim who wanted the updated testing panel and access to their results. However, the service mainly caters to the Modern Orthodox and secular communities and advises preconception testing. “Our goal is for everyone to do this as a life-cycle event,” said Kener. “Just like you buy a ring and plan a wedding, we want it to be a step that everyone knows about.”

Katz has many friends who were tested through Dor Yeshorim and have no desire to know their results. Married last year, Katz insists that disclosing carrier status and considering options are crucial discussions for any relationship. “There’s no reason today that a match shouldn’t happen because those people are carriers,” she said. “If someone doesn’t want to date me because I’m a carrier for a disease, then maybe I don’t want to be with that person. I’d rather skip the free dinner.”

Even for practitioners, like Rose and Zinberg, who fight for transparency in genetics, it’s tough to find fault with an organization that has fine-tuned a method to so successfully avert human suffering. “They have contributed greatly to the eradication of Tay-Sachs,” said Rose. “And they’ve done it in a way that didn’t uncover peoples’ secrets.”

She praised Dor Yeshorim for its crucial role in the Orthodox community, noting that Hasidim would not get tested otherwise; the stigma remains too burdensome for young people and their families. “I think we’re slowly getting into the more traditional communities and explaining it’s OK to be a carrier, it shouldn’t be a stigma, it’s not a big deal. But I don’t know if we’ll ever get into the Hasidic community.”

But Meshchaninov won’t resist change in his community, as long as it comes naturally. “I think that stigmatisation and how people choose to view things is very much a product of the time that you live in,” he said. “But with exposure and education, things change.”

These services ensure you and your partner don’t share genes for Ashkenazi diseases. And they’ll tell you before the first date.