JCC to Host Discussion
on Jewish Genetic Diseases

They have names such as "Canavan," "Neimann-Pick," "Machado Joseph," "Fabry," "Tay-Sachs," and "Gaucher," and they affect people with names such as "Cohen," "Levy," "Blum," "Klein," "Rosen," and yes, even "Miller."

You see, "Canavan," "Neimann-Pick," "Machado Joseph," "Fabry," "Tay-Sachs," and "Gaucher" are all names of various genetic diseases that are passed down through generations of Ashkenazi Jews. Most such diseases are severely incapacitating and some are tragically debilitating, leading to death in infancy or early childhood, shattering the lives of Jewish families.

The JCC will host a panel discussion of "Jewish Genetic Diseases: Inheritance, Testing and Treatment," on Thursday, Nov. 20, at 7 p.m. Panelists include two representatives from Nationwide Children's Hospital, a family living with a genetic disease and a rabbi.

Dr. Joan Atkin, clinical associate professor of the Pediatrics Division of Molecular and Human Genetics at Nationwide Children's, will open the evening with a presentation on defining Jewish Genetic Diseases. Certified Genetic Counselor Carrie Blout of Nationwide Children's will discuss how these diseases are inherited.

Barbara and Jay Rogal of Pittsburgh, whose 45-year-old daughter, Jeanne, has Gaucher's Disease, will discuss the implications of living with the disease, its diagnosis and treatment in their presentation, "Having a Child with a Jewish Genetic Disease." They are the founders of the Barbara and Jay Rogal Jewish Genetics Disease Fund of the Pittsburgh Foundation.

Wrapping up the discussion will be a presentation by Rabbi Emily Rosenzweig of Temple Israel on "Jewish Views on Modern Genetics."

Sponsors of the event are the Judah Folkman Medical Research and Education Fund of the Columbus Jewish Foundation, and Genzyme Therapeutics.

CenterScene was able to catch up with Rabbi Rosenzweig earlier this week and asked her a few questions about the topic:

Q. What is the Jewish ethical view on prenatal testing as a means for timely medical intervention to mitigate or eliminate disease?
A. There's no easy answer for this question. The best prenatal testing, in Jewish ethical terms, is probably done pre-conception or in some parts of the Jewish community, pre-marriage. That way potential danger - from the pairing of two sets of disease-carrying genes - is avoided. During pregnancy, though, the permissibility of prenatal testing and subsequent medical intervention depends on a variety of issues including the health risks to mother and fetus as well as the permissibility of aborting the pregnancy.

Q. In your viewpoint, has prenatal testing led to real or potential changes in the Jewish socio-cultural environment? If so, how?
A. I don't think I'm qualified to answer this question. But I do know that pregnancy is a mysterious and sometimes scary situation, over which a person can only have so much control. I think people today, Jews and non-Jews, would rather be in control than not in control. Prenatal testing is a way for a future parent to exert some amount of control. (Not having been pregnant, I'm not about to pass judgment on that.)

Q. How would you counsel a couple who have learned that their unborn child has a genetic disease?
A. Obviously, the answer to this question depends on a number of factors. I would counsel the couple to reach the decision that they can live with. We would take into consideration the health of the mother, the mental welfare of both parents, and their ability to provide for a child with that disease. Ideally, mine would be one voice in a team of medical, emotional, and spiritual advisors.

The event is free and open to the public, and refreshments will be served. For more information and to RSVP, contact Shara Reiss, at (614) 231-2731, ext. 363.

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