Jewish Genetic Diseases: Interfaith Doesn’t Equal Immunity

The Victor CenterThanks 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:

  1. Any of the Jewish genetic diseases can be carried by someone of non-Eastern European background.
  2. The most accurate screening for Tay-Sachs includes DNA and enzyme (blood testing—which is not provided by the JScreen test).
  3. 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.
  4. 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 www.victorcenters.org/screening.

On Different Hebrew Pronunciation…

A friend of mine, Amanda, is writing some articles for InterfaithFamily.com, explaining the different ways different people pronounce, translate and transliterate (write with English letters) Hebrew. The first article just went up: The Case of the Missing Sav, and other mysteries in the transition of American Hebrew. But in addition to that, I wanted to share an article that didn’t make it into her final draft.

Wait. Let me back up. One of the sources cited in her article was Alan Mintz’s Hebrew in America: perspectives and prospects. In it he writes,

I am not convinced that the American teaching agenda [of Hebrew] must be set by a dependence on Israeli teachers.

I agree! And I suspect that many parents who have or had children try to learn Hebrew in a synagogue’s religious or Hebrew school would also agree. Fluency in a language does not necessarily a teacher make.

But his argument goes on to explain, as Amanda’s article paraphrases, that in America:

Camps, schools and other infrastructure existed to teach children Ashkenazi Hebrew, in addition to it being the language of synagogues’ prayers. The transition to Sephardi pronunciation was gradual, and was aided by growing feelings of Zionism, the availability of Hebrew courses on college campuses taught in Sephardi Hebrew, sometimes by Israeli instructors, and other factors.

So what does that mean? The majority of Jews in the U.S. are of German and Eastern European descent (Ashkenazi). Many of them spoke Hebrew with their community’s pronunciation, which included pronouncing some “t” sounds (the Hebrew letter tav) as “s” (sav), “o” sometimes became “oy”, and “a” sometimes was “o.” There were many other differences too. (Which we’ll be sharing a resource on shortly!)

Sometimes, because of the push to standardize Hebrew in the U.S., fuelled, in part, by Zionism and a desire to align our Diaspora Jewish communities with Israel, the “old school,” Ashkenazi pronunciations are seen as backwards, stupid, and sloppy. I strongly diagree. In fact, I call that bullshis. (See what I did there?)

And here we return to the article that didn’t make the cut. Because she, and I, found it offensive. It’s archived from a URJ email discussion list, and we don’t know much about it. But the author, Burt, says in part:

Over the course of the last eight years I have discovered something deeply frustrating within our Reform congregational world. The struggle to instill a knowledge and love of standard, modern Hebrew is challenged not only by the centrifugal pulls of assimilation, the extracurricular demands on our children, the challenges of maintaining two-income households and a terminal case of “pleasure principle”, but by the persistence of archaic and inaccurate pronunciation of Liturgical Hebrew due to old habits, ce , pseudo-orthodox affect or cultural sentimentality. The widespread use of this strange half-Hebrew, half-Yiddish dialect I call Ashkebonics (the Jewish equivalent of Ebonics), subverts the proper teaching of Hebrew and exacerbates a cultural and cognitive gap with between the American Jewish Community and Israel. The fact that so many of our Jewish professionals use and reinforce Ashkebonics is to me both puzzling and deeply frustrating.

If you want to read his rant, by all means. But I’ll stop quoting there. In essence, he argues that this historical, cultural, familial Hebrew pronunciation system should be squashed once and for all. He wants to see all Americans using the Hebrew pronunciation of Israel.

Would that simplify things, help folks learn? Perhaps. Perhaps it would be less confusing if we all referred to the 25 hours of Friday evening through Saturday night as “Shabbat” instead of some people saying “Shabbos.” But then, doesn’t learning about our multitude of cultures and histories make us a stronger, deeper, more enriched community as a whole? When we recognize that there is more than one way to speak or pronounce Hebrew, just as there is more than one way to be or do Jewish, just as there is more than one way to claim Judaism as our own… the whole community benefits.