I am going to do something tonight that I have never done before when delivering a sermon. I am going to deliver a sermon I have delivered before. Well, that is not quite true. What I have never done before is to TELL YOU that I am giving a sermon that I have given before! And yet… Even that is not exactly true. The sermon I am about to give is an update of a sermon I gave ten years ago. I need to update it because so much has changed over the past ten years since I originally delivered it to you.
Recently I met in my office with a young Jewish couple who were trying to find a rabbi to marry them. After getting to know one another, they asked me to perform the ceremony, and I readily agreed. They then asked me a question. “What are your non-negotiables? “ Non-negotiables, I asked, what did that mean? They told me that other rabbis they had met with had “non-negotiable” demands from the couple in order to perform the marriage. One rabbi insisted they meet with him for pre-marital counseling over a series of sessions. Another wanted them to undergo psychological testing for marriage readiness. A third insisted they see a financial advisor before the wedding. Without thinking much about it, I told them I had no “non-negotiables”. This couple, in their early thirties, had been dating for ten years and living together for five. They were pretty experienced as a couple. Then I realized that I did have one “non-negotiable”. Before I performed the ceremony, I said, I wanted them to get screened for Jewish Genetic Disorders.
In fact, genetic screening should be a routine part of planning a wedding for any Jews of Ashkenazi or Sephardi descent who intend to have a family. The reasons? At least one in four individuals in the Ashkenazi Jewish population is a carrier for a “Jewish” genetic disorder. Although not as prevalent, these disorders are also more common in Individuals of Sephardi Jewish descent — those whose ancestors are from Spain, Portugal, North Africa, the Mediterranean or the Middle East. Twenty years ago, we were able to test for only four disorders. Today, we are able to test for fifty-one conditions for individuals of Jewish ancestry. In addition we can also test for 210 other conditions that are inherited in a recessive fashion and can be tested for.
This recommendation does not apply only to those who identify as Jewish. Being of Ashkenazi or Sephardi descent means that you have one Jewish grandparent. And although genetic disorders are more prevalent in Jewish individuals, non-Jews may also carry recessive genes for these disorders. Therefore, even those Jewish men and women who are planning to have a child with a partner who is not Jewish should consider genetic testing.
By now you may be wondering why I am speaking about this on this Shabbat. This week’s parasha, Tazria, deals primarily with a skin affliction called Tzara’at in Hebrew. This is commonly translated as “leprosy”. The rabbis felt that one could prevent Taara’at and other afflictions either by abstaining from spiritual trespasses, like gossip, or by looking after our health and the health of our families. In the case of Jewish genetic disorders, knowledge is the key to prevention, and fortunately we are capable of educating those who we care for the most.
How does one go about getting screened? Ten years ago, when I spoke to you about this, I encouraged couples to attend a dinner at a Northbrook synagogue sponsored by the Sarnoff Center for Jewish Genetics. The dinner cost $180 and couples could attend an educational presentation and get tested there. Ten years later. Ie.today, there is no need to schlepp up to Northbrook, no need to shell out $180 for dinner, no need to socialize with other people. Today, the first step is to register online at the Sarnoff Center for Jewish Genetics. Once you register, you are directed to an online education program that prepares you for the testing. One or both individuals then provide a saliva sample and mail it to a laboratory for testing. In two to three weeks a genetic counselor calls with the test results and provides counseling if necessary.
Ten years ago, the cost of this screening could be upwards of $3000. Today, the cost for those with health insurance will be just $49 per person.
A couple does not have to go through the Sarnoff Center for Jewish Genetics to get tested. Unlike ten years ago, today companies offer carrier screening panels through direct-to-consumer (DTC) testing. This means that you order the testing yourself through their website, and results are released to you directly. The Sarnoff Center’s program differs through its educational component, a one-on-one phone call to make sure you understand the testing process and can have any questions or concerns addressed. They also offer a follow-up with the Center’s genetic counselor to ensure you understand the results.
As we pursue the mitzvah of “be fruitful and multiply” it is crucial that we remember the role of genetic testing and counseling in helping couples make informed decisions about their family’s future. Knowledge is indeed power. Please do your part to get the word out so that these preventable diseases can indeed be prevented.
Rabbi Marc D. Rudolph