In fact, genetic screening should be a routine part of planning a wedding for any two Jews of Ashkenazi descent who intend to have a family. At least one in five individuals in the Ashkenazi Jewish population is a carrier for a “Jewish” genetic disorder. We are all familiar with Tay-Sachs disease, but due to genetic counseling it has been nearly eradicated in the Jewish community. Testing for Tay Sachs disease began in 1971. Up until ten years ago, we were able to test for only four disorders. Today, there are eighteen genetic disorders for which there is testing available. 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 we are all capable of educating those who we care for the most. What if a couple undergoes genetic testing, and finds out that they are both carriers of one of these eighteen genetic diseases? How does this knowledge help them? Do they now need to give up the dream of having their own biological children? If a both individuals in a couple are found to be carriers of a genetic disease, there is a one in four chance that a child born to them will actually have the disease. For some diseases, like Tay-Sachs and Nieman-Pick, there is no treatment and those affected by the disease die at a very young age. With others, like Gaucher Disease, there is effective treatment and a person can live a normal life span. For cystic fibrosis, which can be tested for and which occurs in the Jewish population at the same frequency as in the general Caucasian population, there is treatment to mitigate symptoms, but the median life span is 37 years old. Up until the early 1990s, if a couple discovered they were both carriers of a recessive gene for a Jewish genetic disease, they had two choices. They could decide not to reproduce, and adopt if they wished to have a family. Or, they could roll the dice and become pregnant. There could be pre-natal testing, and, if the fetus was found to have the disease, a decision could be made to terminate the pregnancy at that time. Remember, even if both parents are carriers of the gene for the disease, there is a 75% chance the fetus will not carry both genes that cause the disease to express itself, and the child will never have the disease. Still, termination of a pregnancy is no easy matter for the other 25% of the time, no matter what the reason. In the early 1990s, a new development occurred, which I just learned about through attending a conference for rabbis on Jewish Genetic disorders a few weeks ago. I knew, of course, about in-vitro fertilization, where an egg can be fertilized outside of the womb and implanted as an embryo. I did not know that the embryo can be tested for genetic diseases before it is implanted. Now, doctors can choose to implant only those embryos that do not have a copy of the gene that would lead to disease. This eliminates the need to contemplate termination of the pregnancy, because one knows beforehand that the embryo or fetus that was implanted does not have the potential to carry the disease. Genetic screening can be expensive. A full panel of tests can cost over $3000. Fortunately the Chicago Center for Jewish Genetic Disorders sponsors a yearly dinner and educational program that costs $180 with genetic screening included. That is on June 12th at Congregation Beth Shalom in Northbrook. Israel, by the way, was the first country to offer free genetic testing and counseling to all couples. Israeli scientists have been in the forefront of research on genetic disease. 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. Shabbat Shalom Rabbi Marc D. Rudolph
Parasha Tazria
Be Mindful and Multiply
Recently I met in my office with a young Jewish couple who were trying to find a rabbi to marry them this New Years Eve. 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 wanted them to 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.
