Feb 29th 2008, 00:00

Would you want to know if you were susceptible to developing a hereditary disease? Naturally, many factors go into answering that question. As many of you know, my father suffered from Huntington’s Disease. Basically it was 50/50 whether or not I would also carry and thus develop the neurological disorder. It was also 50/50 that if I were a carrier whether or not I would pass the gene on to my children. Before Laura and I were married, we decided to undergo genetic testing so that we would have all the facts before us in order to make informed decisions.

There were two preliminary steps. First, they had to test my father to make sure that it was indeed Huntington’s Disease that he had. Secondly, they had to do a DNA match to make sure he was really my father. Unfortunately, he did have Huntington’s (though a relatively mild case), and to my mother’s relief, he really was my father.

The next step was to see if I inherited the gene that caused Huntington’s. This month 13 years ago I underwent genetic testing and received the news. At the time, we were living in Cincinnati where I was attending rabbinic school. I had a student pulpit in Marion, Indiana, and as it turned out, the world center of Huntington’s Disease research was at Indiana University. My father was in a nursing home back here in California and I had to arrange for blood to be drawn from him and shipped to Indiana. On our way to one of our visits to Marion, we stopped in at the university for the results. Fortunately, the coin flip was in my favor. I was not a carrier, I would never develop the disease, and I could not pass it on to any future children.

The decision to undergo genetic testing was a difficult one to make. I was young, recently married, about to be ordained as a rabbi, and about to embark on my career and family. Since the technology was there, I wanted to know what the future held for me. It was the right decision then and one I would make again.

Since then, the technology has greatly advanced, and many more diseases can be predicted by genetic testing. Of course, knowing you will develop a particular disease can lead to many difficult challenges. Do you tell your children? Do you tell your employer? Do you tell your health insurance company? How do you continue to live your life? Given these difficulties, many people simply do not want to know what the future holds. They take the “I will cross that bridge when I get to it” approach. Others want to know if they will develop a particular cancer so they can take possible preventative steps with respect to diet, exercise, and other life decisions. Either way, these are difficult and deeply personal decisions to have to make.

For our Second Friday program this month, we will have two professionals in this area. Jeanne Homer, a Certified Genetic Counselor and Coordinator of the Hereditary Cancer Program at Hoag Hospital, and Nancy Raymon, RN MN at Hoag Cancer Center will be here to discuss what is happening in the field of genetic testing. Our service begins at 6:00 PM on March 14^th, followed by dinner (reservations required) and then their program. I hope those of you interested in this topic will be at TBT to hear this important presentation. If anyone is facing a similar situation to what I dealt with years ago, I would be happy to discuss with you my experiences and my decision-making process which was heavily shaped by my Judasim.

Lech L’shalom – May you go in peace,