Now, normally this would not be my ideal dinner-table conversation, as my DNA knowledge is limited to 9th grade biology (and that is light years in the past). But, with the Victor Center’s testing for Jewish Genetic Diseases coming up this Wednesday, this topic is certainly on my mind. I hate to plagiarize, and since the Victor Center said it so well, I’ll include their mission statement here:
The mission of the Victor Centers for Jewish Genetic Diseases is to ensure ongoing access to comprehensive genetic education, screening and counseling services. This is accomplished through Jewish community education programs and screening programs for healthy individuals at risk for being carriers of a gene mutation for any one of these diseases. Read more…
Before I met Brooke Heyman, the chair of the Jewish Genetic Disease Screening taking place at Hillel this Wednesday, I had a faint idea about what this was all about. But after a great information session with a local geneticist and genetic counselor, I understood a lot more. The testing and screening is a way for Ashkenazi Jews to determine if they are carriers of 11 “common” Jewish genetic diseases. About 1 in 5 Ashkenazi Jews is a carrier. The testing, screening, and counseling that precedes and concludes the event are there to help participants make decisions and figure out what the information means to them.
At first, this seemed completely rational to me. Of course I’d want to know if I’m a carrier of a fatal disease, which could affect my future kids (and that’s a long way in the future). But naturally, there are ethical debates that can be explored, although this isn’t the forum where I want to explore them.
What’s remarkable about this project and event is that there is no cost to the participants who get screened. You must be between 18 and 29 years old, and have at least one (Ashkenazi) Jewish parent (as I do). Normally, the testing is incredibly expensive so this is a great opportunity for people who may not have considered this because of its high cost.
This campaign is attracting the eye of the press too–The Jewish Chronicle put together a four-part series about raising awareness of Ashkenazi genetic diseases. You can read the first one here and the others are online as well.
In case you hadn’t figured it out by now, I signed up. I’m interested to see what others think–if you had this opportunity, would you take advantage of it? I won’t receive the results for several months, but I’m sure it will be a bit nerve-wracking. What would you do?
