Thanks to various Jewish ad campaigns and informational events, I know the big, scary Jewish genetics statistic: One in four Ashkenazi Jews is a carrier for at least one of the 19 preventable genetic diseases. But when Dr. Jodi Hoffman of Tufts Medical Center informed me that, “a big misconception is that interfaith couples are not at risk for having children affected with Jewish genetic diseases and therefore do not need to get screened before starting a family,” it was news to me. Unlike my colleague Wendy Armon who wrote an informative article on the subject last year, I had no idea, nor did many of my friends.
Who knew interfaith and interracial couples are not exempt from the need to test for Jewish genetic diseases? (Besides Wendy and Dr. Hoffman, that is.)
Particularly in light of this pervasive ignorance, renowned geneticist and pediatrician Dr. Hoffman has dedicated years to doing outreach to Jewish and interfaith families, working to dispel misconceptions like the one I had. Nationally recognized for her expertise in screening for Jewish genetic diseases, she is currently the Director of the Victor Outreach and Screening Program for Ashkenazi Jews at Tufts Medical Center in Boston. One of U.S. News & World Report’s “Top Doctors” in 2012, Dr. Hoffman is determined to reach as many people as she possibly can.
Shortly after I connected with Dr. Hoffman, Elizabeth Freid Vocke, one of our regular contributors on InterfaithFamily, wrote about the scare her interfaith family endured prior to the birth of their daughter Mirabelle. I asked Dr. Hoffman for her thoughts on Vocke’s article.
In light of common misinformation about proper genetic testing, is the article accurate? Is there anything you believe is particularly important to highlight?
Yes, it is definitely relevant. I think the key points to emphasize are:
- Any of the Jewish genetic diseases can be carried by someone of non-Eastern European background.
- The most accurate screening for Tay-Sachs includes DNA and enzyme (blood testing—which is not provided by the JScreen test).
- If the partner of Ashkenazi Jewish background screens positive, the follow-up screening needs to be based on the ethnic background of the other partner–not the Ashkenazi Jewish screening panel.
- Screening is best done prior to pregnancy to allow for the most reproductive options.
What recommendations would you give to interfaith couples?
Get screened and update your screening. A simple blood test will tell you if you are a carrier. There are 3 ways to get screened: 1) Contact your physician or OB/GYN. 2) Schedule an appointment at the Victor Outreach and Screening Program Clinic at Tufts Medical Center. Call (617) 636-7721 to make an appointment. 3) Attend a Victor Center community screening. You can find an upcoming screening and more information at victorcenters.org/.