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Dor Yeshorim – Re: ‘Should Have, Could Have, Yet Didn’t’
And Reader Response (Chronicles 12-22; 1-5)
This is written in response to the heartfelt letter written by an anguished young woman, “Should Have, Could Have, Yet Didn’t” and to those who reacted emphatically with their own feedback.
1. To “Should Have, Could Have, Yet Didn’t:” It pained me to read of your heartbreaking experience, since the very mission of Dor Yeshorim is the prevention of genetic diseases without causing damage or harm, including the kind of psychological anguish you are suffering now.
The following remarks are intended for the individual who recognizes and understands the potential for negative psychological outcome of carrier status knowledge and wishes to use the Dor Yeshorim program in the way in which it was intended. This is not an attempt to convince those who stubbornly cling to ideas stemming from denial of life’s realities. Nevertheless, due to the potential for great damage to Klal Yisrael through the letters of misguided individuals, I am compelled to respond as follows:
2. In Letter #1, the writer asks: “What is wrong with knowing whether and which of one’s own children is a carrier of a disease?” Later, the writer admits that his/her children were tested privately and “as it turned out,” were not carriers of any of the diseases tested by Dor Yeshorim.
I respectfully suggest to the writer: First, are you absolutely sure that all diseases on the DY panel were tested? Second, please take a few quiet moments to reflect and be honest with yourself – would you feel the same way if one or more of your children did turn out to be a carrier for one or more fatal disease? If, after honest reflection, you believe your opinion to be the same, you are of a small minority.
The majority of individuals, regardless of their level of intellect and education, have great difficulty using intellect to dominate emotion. Although most educated people are cognitively aware that being a carrier of a recessive genetic disease is of no health consequence by itself, experience has shown (and been verified in medical journals time and time again) that even highly respected medical professionals have difficulty integrating the knowledge of positive carrier status. This is human nature, especially at a time when one is involved in the pursuit of a marriage partner.
Dor Yeshorim is acutely aware of and sensitive to this and was created expressly for the purpose of protecting individuals from their own potential lifelong negative psychological experiences that would result from knowing one’s own carrier status.
As a case in point, “Could Have, Should Have, Yet Didn’t” procrastinated in finding out compatibility status, a task which − if done early on − would have amounted to nothing more than “on-with-the-next-prospective-match.” But a small part of her may have been emotionally unprepared for the possibility of a negative answer and thus the delay in checking compatibility.
Had she in fact known she was a carrier through private testing, this knowledge would have been of no benefit to her at all, and she would have been propelled to delay even more! Human nature dictates that individuals prone to avoiding tasks that have the potential of causing even the slightest pain willsurely procrastinate should there be a definite possibility for pain.
Additionally, current statistics bear out that one in two couples will have a carrier among them, as one in four individuals is a carrier for a recessive genetic disease. That amounts to a lot of carriers, all of whom are deserving of protection from stigma and the dignified way in which DY tests and provides access to genetic information.
3. In the same letter, the writer states: “With private, informed testing, someone who turns out to be a carrier will know that checking the D.Y. numbers early on or before a first date is an absolute must.” I should hope the writer meant this to refer to his/her future potential marriage partner who is unaware of his/her carrier status. For anyone who has taken a Dor Yeshorim test knows that he or she has signed a statement of awareness that a DY test can only be taken by individuals who have no knowledge of their carrier status.
Dor Yeshorim is intended for individuals who want to be protected from knowledge of their carrier status, not those who already know they are carriers and want to then be served by Dor Yeshorim. This practice would be in direct violation of the principles upon which Dor Yeshorim was founded, and anyone found to engage in such practice would be automatically disqualified from receiving any further DY service. Such practice is deemed gezailah, as provided by the written psak of our gedolim.
Additionally, would this practice be the norm, Dor Yeshorim would become a “carrier” organization and its purpose obsolete, creating a situation of polarization within the Jewish community of “carriers” and “non-carriers” − thus causing all carriers social and psychological stigma and defeating the very purpose of DY’s existence.
4. In Letter #2, the writer states: “Dor Yeshorim informed me that a match was not compatible. We dropped the shidduch and subsequently learned that the Dor Yeshorim findings were not necessarily conclusive Dor Yeshorim does not have the facilities for further testing and therefore takes the conservative approach of declaring the couple to be incompatible. In our case, after consulting with a doctor and extensive testing by an expert recommended by Dor Yeshorim, it was determined that the ‘probable’ positive was definitely negative.”
The facts as stated are misrepresented and sadly misleading and not worthy of argument. Suffice it to say that the letter serves only to confuse others and was a self-serving way to use a newspaper for the purpose of airing disappointment at the expense of others.
5. In Letter #3, the writer states that “Should Have” might have fixed the problem by being referred to the PUAH Institute, as “carrier couples of serious genetic diseases have several medical and halachic options open to them, including in IVF with pre-implantation diagnosis – a procedure that is utilized by many Orthodox couples who cannot conceive naturally.” Although I agree that once already in a situation of commitment to a relationship, other halachically viable options can be explored for reproduction so that the couple can get married and “Should Have” can certainly discuss this with her rav, the Dor Yeshorim program was not designed to be utilized by couples who are already committed to one another.
The point of the DY program is prevention (of multiple issues) and to avoid confronting exactly this type of challenging situation − a couple discovering they are genetically incompatible after having formed an emotional bond! This too is in violation of the Dor Yeshorim program. (Every individual agrees and attests by signature of his/her awareness that testing and checking for compatibility is available only to those who are not yet committed to a relationship. While we would like to be able to help every person in Klal Yisrael, our resources remain limited to the extent that we are unable to immerse ourselves in the lives of participants and their potential incompatibility following emotional attachment.
Furthermore, PUAH is there to help couples unable to conceive. It is a last resort, not a first prerogative! Entering into a marriage knowing one will have to use such methods is a complicated matter, to say the least. These are not meant to be a lifestyle choice − but may become one if people are not vigilant about checking for compatibility early on in a courtship.
In summary: Due to the fact that most couples are genetically compatible and thousands of tragedies have Baruch Hashem been averted, the severity of the potential for the catastrophe of giving birth to genetically diseased babies has left the consciousness of most people. It is simply not a high priority issue among most dating couples. We have all but forgotten what lurks within our genes, ever threatening to rear its ugly head and wreak havoc in our lives and the lives of our future generations!
But as the father of four children who died slow, agonizing deaths due to Tay-Sachs disease, I urge every reader to take the precaution of testing and checking for compatibility before emotional attachment develops in a relationship. Don’t wait until you are poised for engagement! Unfortunately, many couples that approach Dor Yeshorim with inquiries about compatibility are under the misguided belief that compatibility checks are the last step before engagement. And these couples may subsequently suffer serious consequences.
The use of the DY program as it was intended works simply and smoothly – don’t let inertia or fear allow you to procrastinate until the last moment!
Rabbi Josef Ekstein
Founder, Executive Director, Dor Yeshorim