Yom tov is here, and many of us are enjoying a break from our usual daily routines. This might also be an essential opportunity to pause and depart from the constant barrage of news about impeachment or whether anyone in Israel will ever be able to form a governing coalition.
This week, let’s discuss the state of children who have not been born yet and what we can do as a community to assure a healthy and safe future for our offspring. Advanced genetic counseling is available for young Jewish couples who are contemplating marriage and want to increase the probability that the children they would bring into the world will be healthy.
Dr. Stuart Ditchek is a hardworking physician and a community activist with a thriving pediatric medical practice who says he has seen way too many kids in his office suffering from maladies and life-altering conditions that could have been avoided.
“Dor Yeshorim is great, and they opened up the eyes of the community, but their system is outdated,” Dr. Ditchek told the 5TJT last week. He explained that premarital genetic testing is common in all communities, but Orthodox Jews are the most under-tested segment of the population in the country.
As a result of these realities, Dr. Ditchek, after eight years of exhaustive research, has founded and established JPatible. It is a play on words that communicates a message about “Jewish compatibility.” It is not about social compatibility; it is solely about the biological match between potential mates.
JPatible bills itself as an advanced version of Dor Yeshorim. The major difference to the consumer is that while Dor Yeshorim will test potential marriage partners for as many as 16 or so genetic disorders, JPatible routinely tests for 213 possible disorders. JPatible testing has dispensed with drawing blood and features a simple test-at-home saliva kit.
Dr. Ditchek extends profound appreciation to the vision of Rabbi Joseph Eckstein, the founder of Dor Yeshorim, he also says it is imperative that as a community we stay updated with medical technology as a way to save lives. He adds that because of the way Dor Yeshorim operates, decisions on what diseases to test for are made solely by Rabbi Eckstein on a subjective basis.
Dr. Ditchek has seen five cases in the past five years where hereditary disorders in children could have been avoided if the parents were tested prior to marriage or pregnancy. JPatible doctors object to Dor Yeshorim’s decision to limit the number of screenings for potential conditions.
More troubling, Dr. Ditchek says, is the situation, for example, with Gaucher disease, an inherited, genetic autosomal lifelong condition whose symptoms include easy bruising, fatigue and anemia. Dr. Ditchek told us that he found it puzzling that Dor Yeshorim tests for Gaucher but will not reveal the test results to individuals. Dr. Ditchek says he was told that the feeling at Dor Yeshorim is that this is a condition people can live with and that the less information out there about these matters, the less other members of the family will be impacted for future family shidduchim. If that is the philosophy or policy then it should certainly be reexamined.
Everything of this nature is highly confidential, but in an insulated community like ours, sometimes word gets out and the effect is undesirable. This type of pre-marital testing — which is sometimes done before people begin dating — has the potential to prevent the transmission of these diseases through gene-carrying parents.
If you look back three or four decades before Dor Yeshorim was created, marriage was a gene-pool gamble. With the creation of the group and the routine testing that they do, fear of the unknown in this area has been significantly allayed.
These ideas and programs, whether Dor Yeshorim or now JPatible, are scientific breakthroughs that ease the transition for young people from young adulthood to parenthood without having to worry excessively about the unknown genetic future of their children.
Some may criticize the process by saying that all the spontaneity is now being extracted out of young men and women meeting and deciding to form a family together built on love and romance and that is now being replaced by science. But that is far from the reality. Ask any young couples who have a special-needs child and they will tell you that it is not an easy task.
Many of us have heard of cases where a young man and woman meet and decide they want to marry, and at that stage of their relationship they decide to do genetic testing only to learn that they are not medically compatible. A good number of these cases have resulted in these couples breaking up. According to Dr. Ditchek, if these couples want to move forward and nevertheless marry, preimplantation genetic testing can be used to determine outside of the womb whether the embryo is free of genetic diseases.
The JPatible advancements are guided by the rabbinical supervision of Rabbi Dovid Cohen, Rabbi David Ozeri, and Rabbi Gavriel Zinner. Dr. Ditchek is the medical director, and in addition to his practice in Brooklyn he is on the faculty of the NYU School of Medicine and a lecturer for Sanofi/Genzyme on rare diseases.