1 in 3 of us is a carrier for at least one of the over 100 preventable diseases that JScreen tests for. Carriers are perfectly healthy, but when a couple both carry the same mutation for a disease, there is a 25% chance that the child could be affected by that disease. JScreen is the only organization in the world that screens for Ashkenazi, Sephardi, Mizrachi, and Caucasian diseases all in one saliva test and counsels couples who carry the same disease mutation on how to avoid the disease while having healthy children of their own.
Caroline and Randy Gold founded JScreen after their daughter Eden was diagnosed at 18 months with a Jewish Genetic Disease called Mucolipidosis Type IV. Doctors believe that Eden will never walk, never talk, will have a maximum mental capacity of 18 months, will go blind by the time she is 12 and will only live until early adulthood. Totally devastated and wanting to care for Eden in the best possible way, the Golds also felt a sense of responsibility to Klal Yisroel to make sure that no other unsuspecting family suffers the tragedy of having a child with a preventable disease. In creating JScreen, the Golds relied on the Jewish values of Pikuach Nefesh, not standing idly by, and saving a life is like saving the world.
JScreen not only uses, but is built on the concept of Pikuach Nefesh. In the book of Vayikra, the Torah tells us “You shall observe My statutes and My ordinances, which a man shall do and live by them.” This verse is interpreted to mean that in a case of life and death, the preservation of a life is often more important than Jewish Law. Through JScreen, parents act on the importance of Pikuach Nefesh by taking steps to make sure their future children are not born with a Jewish Genetic Disease.
The Torah also tells us in Vayikra that “You shall not stand idly by while your fellow’s blood is shed”. Prior to JScreen, patients were subject to screening for whichever few diseases the doctor or laboratory knew of. There was no “standard panel” for Jewish Genetic Disease screening. JScreen was created so that available information and screening could be widely available to any family planning to have children. JScreen created the most comprehensive panel of Jewish Genetic Diseases in the world and has made the collection and delivery of DNA easy by providing a spit cup and preaddressed Fed Ex envelope. Caroline and Randy Gold did not stand idly by when they felt that they had the responsibility to do something that no one had ever done. In that same spirit, JScreen is not standing idly by as we screen thousands of people to save their future children’s lives.
In the Talmud we learn that “Whoever saves a life, it is considered as if he saved an entire world”. JScreen saves lives every day. Our entire mission is to help Jewish families avoid giving diseases, which are often fatal in childhood, to their children and counseling them on options to have healthy kids. JScreen measures its success by the hundreds of families who were unknowingly at risk for having a child with a disease who now thanks to JScreen are aware of how to avoid that potential tragedy.
The Jewish wisdom that JScreen employs is not just an intangible idea, it is a real, tangible, emotional action that thousands of people across the country have taken part in to save a potential life.
JScreen provides a simple saliva based genetic test so that parents have the tool for Pikuach Nefesh in case they need it. JScreen helps young couples understand their own risk of having a child with a genetic disease, so that the couple themselves can take steps though In vitro Fertilization and Pre-implantation Genetic Diagnosis to be sure their child is not affected by a genetic disease. The Jewish wisdom of Pikuach Nefesh is accessible to these families every time they hug their healthy baby.
Additionally, through social media, national TV and radio, national speaking engagements, and partnerships with other organizations in communities across the country, JScreen encourages sharing our message of the importance of screening. Whether an individual has been screened by JScreen, is a hopeful grandparent, or even just a friend, when you share the message of JScreen you are not standing idly by and you are acting in a way that may actually save a life.
We have screened thousands of people across the country. We have received completed screening kits from every single state in the country. We have identified hundreds of couples who have the same mutation for a genetic disease and have a 25% chance of having a child with that disease. The stories of new parents or grandparents approaching JScreen founders and volunteers with tears in their eyes to say “thank you” and “because of you we have a healthy child” are the reason we do what we do.
JScreen is a program that collects medical data and is therefore governed by HIPPA. Due to HIPPA regulations we cannot include specific evidence related to the individuals we have screened.
Rabbi Joseph B. Soloveitchik explains the stark contrast between fate and destiny, and how we, as Jews, reconcile the notable difference. If one believes in fate alone, the understanding is that “As an object, man appears as acted upon and not as an actor.” In other words, the concept of fate suggests that we have no control of what takes place. With destiny alone, the belief is that “Man is born as an object, dies as an object, but it is within his capability to live as a “subject.” This is to say that the concept of destiny suggests that we control every single thing except for life and death. Our beliefs as a whole, however, point to the fusion of these two points—that ”man’s mission in this world is to turn fate into destiny.” We believe that things happen beyond our control but we still have the ability to make it into our destiny and assert control over situations. The Rav suggests that we take the “fate” thrown at us and turn it into “destiny”. JScreen has learned that given the opportunity, individuals will act to assert control over their fate where they can and will act to change their destiny.
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