For all Jews, genetic disease screening is incredibly important. Ashkenazi, Mizrahi and Sephardi communities are at increased risk for different genetic diseases that occur more frequently than in the general population. Early education, awareness and genetic screening are key steps in both planning healthy families and preventing the continuation of these diseases. To make the process of getting tested as easy as possible, JScreen, a not-for-profit education and carrier screening program based out of Emory University School of Medicine’s Department of Human Genetics, focuses on providing at-home testing and consultation for individuals and families. The JScreen panel includes more than 200 genetic diseases commonly found in Jewish communities.
JScreen asked Boston couple Anabelle Harari and Misha Clebaner to discuss their decision to get screened for genetic diseases and share their experience using the JScreen at-home service.
Tell us a bit about yourselves and your backgrounds.
We are an Ashkenazi-Sephardic couple. Misha was born in Crimea, and Anabelle in Israel. Misha is of Ashkenazi background and Anabelle is Tunisian-Romanian. This data point is of particular importance because Ashkenazi Jews are at greater risk for certain genetic diseases, such as Tay Sachs or Gaucher’s. As we are married for three years now and continue to envision what our family will look like, it was really important for us to acknowledge these elevated risk factors for Ashkenazi Jews and to ensure that we address the realities of family planning and the potential risks that could exist for the next generation.
Was the necessity of genetic testing in Jewish communities something you were always aware of? Was it seen as an important step in your respective communities?
Genetic testing was always on our radar because of the prevalence of genetic diseases in Ashkenazi communities. It seemed like an appropriate step to take when thinking about family planning.
What made you decide to use JScreen?
Misha is an Emory alum and JScreen is based out of Emory University. Emory is right next to the Center for Disease Control, so it is a central hub for thinking about public health issues and for pioneering approaches to contain and limit the impacts of diseases. This is why we felt comfortable and safe using JScreen as a provider for genetic testing.
What was the process like?
The process could not have been any simpler. Both parties sign up online. A kit arrives in the mail and you submit a sample of your saliva; there’s a special solution inside the tube to make sure the sample is preserved as it travels many miles to the lab. You put the tube in a postage-paid bag and that’s all. You are done. The whole process could not have taken more than 30 minutes, from signing up to the process of shipping the package.
What recommendations do you have for people who are on the fence about getting tested for genetic diseases?
It should not even be a question. Get the test.
What’s your biggest takeaway from using JScreen?
There are many ups and downs in family life, but there’s no reason to have to go through it alone when there are professionals available that are willing and able to be of assistance. Take advantage of them as a resource. We sure are happy that we did.
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