Securing Generations: A look Inside Dor Yeshorim

By Matis Glenn

Young couples plan for many things. Where they’ll live, what shul they’ll daven in, who their Rav will be, what schools they want to send their children to, and many other considerations. Parents also give some thought as to how they’ll handle adversity, such as if their children are chas veshalom born with health conditions. It wasn’t very long ago that a family also had to think about what they would do if one of their precious children, Rachmana litzlan, was born with a genetic disease.

Tay-Sachs disease, a genetic condition which results in a baby missing a crucial enzyme used in the removal of the body’s waste products, was once a scourge in the Jewish community, mostly among Ashkenazi Jews. If both parents had the genetic markers for the disease, despite them not having the condition themselves, children born to them would have a high chance of being born with it. Such children would not live more than a few years, while the parents would watch in agony.

Two such parents were Rabbi Yosef Ekstein and his wife, who suffered the tragedy of burying four children who had Tay-Sachs. Born in Budapest in 1944, Rabbi Ekstein emerged from the Holocaust as an infant, and grew up with the words his father told him as a guiding compass – “You survived for a purpose.”

In 1983, fueled by the loss of his children and seeing the plight of numerous members of the Jewish community who suffered the same fate, Rabbi Ekstein sought to fulfill that purpose.

He created Dor Yeshorim, an organization which aimed to use genetic testing to eradicate Tay-Sachs. With humble beginnings and after weathering much controversy, Dor Yeshorim became a household name and a staple of the Jewish community, in the United States, Canada, Europe, Eretz Yisrael, and elsewhere. While tests for Tay-Sachs had been available in laboratories since the 1970s, observant Jews mostly chose not to use them, because of the risk of stigmatization when one’s carrier status was known. Dor Yeshorim addressed this concern by making its testing fully anonymous, in accordance with a procedure approved by Gedolei Yisrael.

Over 40 years, the organization has prevented thousands of calamities, and tests upwards of 40,000 individuals annually. Despite having no college education or medical training, Rabbi Ekstein has authored or co-authored over 40 articles in medical journals on the topic of genetic diseases.

Thanks to the efforts of the organization, Tay-Sachs has all but disappeared from the Jewish community; a ward for Tay-Sachs children in Kingsbrook Medical Center, which once had a long waiting list, closed its doors permanently in the late 1990s.

But while Tay-Sachs has been all but eliminated, Dor Yeshorim began testing for other debilitating diseases, including cystic fibrosis, familial dysautonomia, canavan disease, and more recently, an optional panel on genetic hearing loss conditions. In 2015, Gedolei Yisrael of the Sefardi community gave their approval for genetic testing of their communities.

Rabbi Ekstein spoke with Hamodia about his organization’s history, and the details of its operations, including a first-ever public explanation of how Dor Yeshorim decides to implement new testing into its panel.

How and why did Dor Yeshorim begin?

The founding of Dor Yeshorim is rooted in my own very painful experience of losing four children to Tay-Sachs.  At the time, there was no knowledge of recessive genetic diseases and definitely no one to guide us.  I was determined that no one would ever have to suffer the way our family did. Dor Yeshorim grew from there; from my dining room table and rotary phone.

What obstacles did you have to overcome?

There were many. We faced the same logistical and financial challenges any new organization faces, but with the very significant added factor of resistance from the Jewish community. At the very beginning, askanim and gevirim that I approached were skeptical.  No one thought the community would agree to test, and potential supporters worried it was a waste of time, effort and money. But with the encouragement and guidance of esteemed Rabbanim, we began operations despite the naysayers.

Our research began with Tay-Sachs and with tremendous work, time, and convincing, we developed and introduced a test as well as the now famous Dor Yeshorim testing system. B’siyatta diShmaya, it was so successful, Dor Yeshorim played a main role in the closing of the Tay-Sachs ward at Kingsbrook Medical Center in Brooklyn, New York.

Years later, once the Tay-Sachs testing was firmly established, I received a call from the Manchester Rosh Yeshivah, Harav Yehuda Segal, zt”l. He said that he had heard it was possible to test for cystic fibrosis and, based on existing concerns brought to his attention, asked that Dor Yeshorim start testing for the disease. I vividly remember answering, “I only have 24 hours a day and two hands!” to which Rav Segal replied: “Ich vel ach helfin”; I will help you.  He immediately wrote a letter to a donor who organized a parlor meeting.  That meeting brought us to the next level of funding to begin research and development to test for additional diseases.  

Speaking of Rabbanim, we continue to follow the direction of Gedolei Yisrael regarding our policies, such as not disclosing carrier status and which diseases to test for. 

How are diseases passed on to children?

To understand the process there’s a little bit of science involved. Dor Yeshorim screens to detect if someone is a carrier for recessive genetic diseases. The term “carrier” refers to an individual whose DNA contains a mutated gene. Everyone is a carrier for at least a few genetic diseases. It’s important to know that being a carrier doesn’t affect your health in any way. It is only when two people who are carriers for the same disease get married that the possibility arises to have children affected by the disease for which both parents are carriers.

Does Dor Yeshorim test for all diseases that there is testing available for?

No. Dor Yeshorim’s standard panel screens for incurable, recessive diseases prevalent in the Jewish population that have proven to be fatal or seriously debilitating. Dor Yeshorim’s policy is to help families make shidduchim, not break them. Understandably, some assume that the more diseases you test for, the better off you are. It is essential to understand that more is less when considering diseases for inclusion on the testing panel. While there are hundreds of possible genetic disorders, global scientific experts recommend testing for only a handful.

No testing panel can guarantee disease-free children, because new genetic mutations continue to emerge. More so, you can screen for thousands of genetic mutations; many would not necessitate stopping a shidduch, and many are irrelevant to the Jewish community.

What is the process for adding a disease to the testing panels?

When a family with a suspected genetic disease reaches out to Dor Yeshorim, the first step is to take blood from the child and the parents. We immediately begin researching all possible genetic origins. Once the genetic mutation is identified and confirmed, Dor Yeshorim sets out to create a test specifically for this new genetic mutation. In doing so, we enable future healthy matches for this particular family. 

Unfortunately, new diseases continue to emerge. Therefore, our testing capabilities need to be constantly updated with new tests.

Dor Yeshorim will only test for a disease that we can identify clearly, with extremely accurate testing.

Additional testing of thousands of samples validates our findings, confirms the accuracy, and determines the frequency of occurrence. We research the potential impact of the disease (whether or not it is life-threatening or will severely impact quality of life) and then a determination is made if this disease should be added to the testing panel.  We like to say that we are in the business of making shidduchim, not breaking them.  We take the responsibility very seriously which is why we consider all the halachic and medical implications first.

Our panels include screening for diseases that no other institution or organization world-wide offers testing for, specifically for the Jewish community.

What does Dor Yeshorim do for families with children suffering from these newly discovered illnesses?

Most people are unfamiliar with our research and healthcare department and that Dor Yeshorim is at the forefront of the genetic disease industry. We hope they never have reason to. Dor Yeshorim provides support, education, direction, clarity, and cutting-edge research information for families facing genetic challenges. All of these services are free of charge and given with much compassion, sensitivity, and confidentiality.

In fact, doctors across the United States and across the world partner with Dor Yeshorim to assist their patients.

Before a family has answers, they suffer deeply; not only from their child’s severe illness but also in attempting to move forward in shidduchim for other children in the family and in growing their family. It literally becomes a reality of me’afeilah l’orah (from darkness to light) when a family is given the information needed to move forward.

Can you elaborate on the actual technical process that takes place when a person gets tested with Dor Yeshorim?

Everyone knows about the mass testing days in yeshivos and schools across the world. I’m proud and grateful to the Eibershter to say that it has become a rite of passage. The blood is drawn, you get a cup of orange juice and a cookie, you receive a Dor Yeshorim ID number and within a few months results are ready.

A very involved testing process takes place during those months. Once the blood is taken, it is sent to state-of-the-art labs especially established for Dor Yeshorim’s purposes, with high-tech DNA extraction machines. These machines run the blood, separate DNA, prepare DNA for testing of numerous mutations, analyze the DNA and create a report; all steps include many layers of control and confirmation for quality assurance. We have a very stringent confirmation process in place; if someone’s bloodwork shows carrier status, we immediately retest the blood for those specific mutations with several methods of testing to ensure definitive results. 

There is zero acceptable margin of error.

It is interesting to note that from an industry or scientific point of view, this confirmation process is far beyond the standard of any other lab. Dor Yeshorim constantly keeps in mind the immense responsibility of alerting parents to a potential shidduchim problem, and the need for expedient compatibility results.

Why does Dor Yeshorim take blood samples rather than a cheek swab?

For two very specific and important reasons, and both are in service of the community. One, because blood is much richer in DNA, provides clearer results and can be used for multiple testings including potential confirmation tests. Secondly, because blood can be kept fresh and retested when new testing needs arise, whereas a cheek swab cannot.

Are tests done in your own lab or in a third-party facility?

For the standard testing, we utilize NYS-, CLIA-, and ISO-certified labs specifically designated for Dor Yeshorim’s needs; this helps keep costs down. Our labs are run by scientists who understand and appreciate our mission and the Jewish community.

We established an additional lab with unique capabilities for Dor Yeshorim’s research purposes. We partner with top facilities worldwide when needed.

What steps are in place to maintain anonymity and prevent mistakes?

Anonymity is the very foundation of our organization; carrier status is never divulged to anyone, at any stage of our operations. This is a pivotal reality which eliminates any risk of stigmatization. From the blood draw all the way to compatibility checks, no one ever knows if a person is a carrier for a disease. It is irrelevant unless the numbers are incompatible. At that point, both parties are given the option to find out more and receive genetic guidance.

We have numerous safeguards in place. Test samples are sent to two different labs; on the remote chance that something goes wrong in one location, we have a backup in another. Neither lab knows the identity of the clients. All samples identified as carriers are re-tested to ensure accuracy of the findings and our data entry is duplicated by two separate staff members and compared using a computer; even among people who have tested negative, a large percentage are re-tested. We have seen tremendous siyatta diShmaya in 40 years of operation and we constantly daven that our safeguards continue to serve klal Yisrael.

Are certain genetic markers found in some populations more than others?

Usually, yes. Every community — Ashkenazi, Persian, Yemenite, Syrian, etc. — has specific repeated tendencies. It is important to note that everyone is usually a carrier for something. In the Jewish world, there is a general inclination for communities to marry within. As a result, the tendency towards a certain disease stays within that community.

In that case, why does Dor Yeshorim give members of every community the same testing panel?

Sometimes you might not know the origins of your grandparents, and even when you do, the further up in your family tree you go, the less certainty there is. We constantly find genetic markers from other communities as well. In addition, certain diseases have been found to be relevant across the board.

How does Dor Yeshorim fund its activities?

The public should know that the research and development leading up to the point of adding new diseases, as well as the research we conduct for families in need of genetic answers, costs millions of dollars. Dor Yeshorim relies on the funding of generous donors across the globe who understand and appreciate our mission of healthy generations. One of our earliest supporters was Mr. Berry Reichmann, z”l (see sidebar). Once he was on board, the Reichmann family was and continues to be one of our main supporters.

Have the numbers of incompatible shidduchim risen or decreased over the years?

Even though incompatibilities have risen, since we now test for more diseases, this is due to the rapid growth of Klal Yisrael. The more people test, the more instances there will be of incompatibility.

Nevertheless, 98% of matches are compatible, and that takes into account the non-fatal incompatibility of genetic hearing loss.

Why is hearing loss now included in Dor Yeshorim’s testing?

I’m glad you asked. Dor Yeshorim was actually approached by close to one thousand families and asked to develop testing for hearing loss. But let’s go back for a minute to Dor Yeshorim’s policy of helping families make shidduchim, not break them, and dealing with diseases that are either life-threatening or debilitating.

There are many hearing-impaired individuals living very full lives.  And if that’s the case, it would seem that hearing loss testing does not belong in Dor Yeshorim. 

Over the years the requests for testing to address hearing loss have increased very significantly. People became aware of genetic hearing loss when it occurred in families with no previous history. The need for testing became very clear  and  after much discussion and consideration, Rabbanim mandated that we proceed.

I want to be very clear. This does not in any way diminish the capabilities of the hearing-impaired community. In fact, it is thanks to all those experiencing hearing loss that we have been able to develop testing. Hearing loss remains its own optional panel and, unlike the standard panel, we notify each person when the incompatibility is a result of hearing loss so that they can consult with their own Rabbanim and doctors.

What is the most important message Dor Yeshorim would like the public to hear?

Test early. Check early. I can’t stress this enough.  The system is in place and it works smoothly, when people use it in a timely manner! We do the testing in high schools for a reason, way before most boys and girls are even thinking about shidduchim. It takes only five minutes to make a compatibility phone call.

 Not a day goes by in the Dor Yeshorim office without frantic calls about the need to test blood at the last second or incompatible results when a couple is already invested in the future. This is potentially heartbreaking and completely unnecessary.

Dor Yeshorim’s first benefactor, Mr. Berry Reichmann, z”l

Almost 40 years ago, when Dor Yeshorim was first beginning, finding financial backers was very difficult.

In 1985, Rabbi Ekstein knocked on the door of noted philanthropist Mr. Albert (Berry) Reichmann’s Toronto home to explain his mission. Mr. Reichmann personally opened the door, listened closely, was impressed with Rabbi Ekstein’s passion, but felt Klal Yisroel was not ready to accept the idea of genetic testing before a shidduch.

One year later, through Rabbi Ekstein’s unwavering determination, 500 tests had been conducted for potential shidduchim, and three incompatibles were found. A group of Dor Yeshorim askanim flew to Toronto to share the progress with Mr. Reichmann. Within an hour they were seen, despite not having arranged an appointment in advance.

Upon hearing the progress Rabbi Ekstein had made against tremendous odds, Mr. Reichmann asked that Dor Yeshorim provide a comprehensive annual budget. A report was prepared and sent to Mr. Reichmann for review.

A large meeting took place at the New York headquarters of Olympia and York, the company that Mr. Reichmann co-founded with his brothers. Dor Yeshorim’s team looked on in wonder as the staff relocated and shuffled at least five other business meetings to make room for their meeting. When one of the askanim apologized for the extra work, the secretary responded: “We have standing orders in this office. If there is a conflict between a charity meeting and a business meeting, charity comes first.”

Mr. Reichmann refused the head of the table, sitting instead in the middle and patiently listening to everyone’s input. From his questions and comments, it was clear that he had conducted extensive research. At the conclusion of the meeting Mr. Reichmann committed to provide a very large sum, paid out monthly, to cover a large part of the budget.

From that moment forward, at the first of every single month, for the next few years, a check arrived to Dor Yeshorim’s office. Mr. Reichmann did this without publicity or fanfare.

One of the participants still recalls that meeting with absolute clarity: “The commitment was an enormously impressive sum of money. But it paled in comparison to the respect and dignity Mr. Reichmann showed a group of young men embarking on a seemingly impossible mission.”