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Thursday, December 8, 2016

The Problem With Dor Yeshorim

Illustration photo by Matty Stern / U.S. Embassy Tel Aviv

Genetics activist Sarah Dworcan says singles tested by the Dor Yeshorim organization are not "safely assured."
By Sarah Dworcan for COLlive

We are taught that the truth always prevails. But there are times when one cannot stand by and wait for the truth to be uncovered. When lives are at stake, every moment matters, and if you know something that can save a life and yet you remain silent, you too are culpable.

The Dor Yeshorim article posted on COLlive.com on Thursday, December 1st, outraged me.

Not because my child was born with an extremely rare but known Ashkenazic genetic disease, after we had both been tested by Dor Yeshorim before marriage and told we were "compatible."

It is because the lies and manipulation continue to fester.

This year alone, 25,000 young frum boys and girls will be tested by Dor Yeshorim and will think, as we did, that their genetic prospects are safely assured.

In our communities, Dor Yeshorim is painted as The Angel. This is not only misleading; it is dangerous.

The article simply fails to mention the most important fact — Dor Yeshorim only tests for 7 diseases. There are a total of 39 life-threatening Ashkenazic diseases, made up of hundreds of mutations.

In addition to the limited diseases, Dor Yeshorim only account for one known mutation of each disease that they actually test for. Who makes the decision of what disease is deemed "serious" enough to warrant being tested for? Is being at-risk for metabolic crisis, coma and death each moment of everyday considered serious enough? Apparently, not.

Also not mentioned is the "second panel" issue. The second panel only tests for another 7 diseases, which amounts to a total of 14 diseases. That is 14 out of 39. This second panel needs to be personally requested and an additional fee paid for.

Besides the fact that the concept of limited panels in the genetic world is outdated, why does a second panel even exist? If those diseases are important, surely it should all be on one test? And why only for an additional seven diseases? What about the other twenty-three?

Finally, Dor Yeshorim is NOT a medical organization, despite what their picture and tagline would have you believe.

How does this continue when their choices affect lives? Do these lives not matter? Are they not, in their words, "ensuring healthy children for Klal Yisroel”?

In truth, I believe it is better not to do genetic testing than to be tested through Dor Yeshorim. That way, at least people do not have a false sense of security that they have been "comprehensively genetically tested."

That is why my husband Yossi Dworcan and I founded Jnetic, an initiative to raise awareness regarding the systems used in screening for genetic disorders prevalent in the Jewish community.

We are working to get the facts straight and, as a community, take a stand. All known life-threatening diseases and mutations should be tested for.

* Upon request of the patient, as with any other personal medical information, results should be available and explained by a genetic counselor.

* The stigma and fear factor associated with carrier status should be broken. The answer to this is: Education, education, education. There is no shame in being a carrier; every person in the world is a carrier for at least 5 different mutations. We, as Jews, simply have a higher chance of being carriers for the same diseases because of our likely common lineage.

* When both parties are carriers, there are ways to have healthy children to the best of science's ability. These options are Halachically and medically sound and should be explained to the community.

* "Compatible" and "not compatible" are not medical terms, and we should not allow them to label us as such. Breaking up a shidduch (match) because both parties are carriers for a genetic mutation is something that we, as individuals, should be able to make an informed and educated decision about with the help of medical professionals. Making this decision for others is called playing G-d.

* Cost is not a factor. Check out Jscreen. More comprehensive tests are available at a cheaper rate than that of Dor Yeshorim’s, plus they include genetic counseling.

* MOST importantly: We all have the right and obligation to be informed and educated.

I don't expect you take my word for it. I encourage you to reach out to a medical professional who specializes in genetics and specifically how it relates to the Jewish community. If you would like a reference to one, please feel free to reach out to us at info@jnetic.org.

Jnetic founders Yossi and Sarah Dworcan with their son Eli

5 comments:

The Thinking Yid said...

Here's another issue with them! They charge an exorbitant amount of money to check whether or not a couple possesses a gene. They dont even tell you which one has it or if both have it. Just if they are a match or not.
Places such as NYU have a program that allow couples to come in for genetic testing for an 18 dollar co-pay!! That includes a full panel of tests and they provide you with a full report of your genetic testing! You can check the likelihood of your kids having blue or brown eyes! You can check everything! For nothing! Why should dor yeshorim cost so much! Its just another example of people looking to make a buck on things the jewish community needs!
Check us out at ThinkingYId.com

Anonymous said...

Thank you for bringing this to light. As with many things in this world, things change. With that it's important that genetic screening change as well and I agree that "compatible" and "not compatible" are not genetic terms and people have a right to know if and what they are carriers of.
Rabbi Eckstein played a huge role in making the community aware of genetic testing but there are better ways of doing this in the modern era so let's bring other voices into this discussion.
Hatzlachah and I plan on looking into the NYU program that does genetic testing for a small copay.

Anonymous said...

The article is accurate. My child was also born with a genetic disease. It took months of doctors who finally suggested we go for genetic testing. BH they found they issue and informed us that my child cannot eat fatty foods.
My whole family was tested and found out 2 of my other children are also carriers. These are something Dor Yesharum does not test, neither does JScreen.

If you want genetic testing, go to a geneticists. Most cases the insurance pays for it and they do a lot more tests than the standard Jewish places.

Monsey said...

Another type of dangerous pretenders are certain yeshiva administrators who have no business being in chinuch.

They are corrupt & cruelly reject all kinds of children who have nowhere to go.

Yeshiva of Spring Valley meanwhile, just sent a nasty letter to parents written in code words that translate to if we acted like bastards to not take your kids last year, "good luck" for next year. The letter serves as discouragement to even try and so they can more easily deflect rabbonim, that hey, we warned them that applying would be a waste of their time.

Yeshiva of Fling Valley said...

YSV will take any losers who have the right connections, like they did with the Nagel kids, while acting like cruel bastards to all kinds of good kids.

Here is the latest with Ari Nagel. Another paper is reporting that the City Health Dept is also now involved. They want Nagel to provide a blood sample to see if he is spreading diseases:

http://nypost.com/2016/07/30/the-sperminator-doesnt-have-time-for-prison/

Serial sperm donor Ari Nagel has found himself in a sticky situation again — this time with the New York State Department of Health.

Last month, the state sent him a certified letter saying “persons or entities that perform tissue banking activities” require a license and gave him until June 27 to respond.

The legendary “Spermintor” — who has spawned 22 kids with 18 women, via both sexual intercourse and insemination via a cervical cup — has yet to reply.

Nagel, a 40-year-old Brooklyn math professor, says he’s “obviously” not going to get a license but admits he’s nervous.

“I don’t want to get into trouble with the law — I go to family courts enough,” says the proud papa who has been sued by five moms for child support.

Operating unlicensed tissue banks in New York state can lead to penalties of $2,000 per violation, but whether or not that’s what Nagel is doing is a murky legal area. The DOH doesn’t regulate individual sperm donation but does regulate sperm banks, which it defines as “any person or facility which solicits, retrieves, performs donor selection and/or testing, preserves, transports, allocates, distributes, acquires, processes, stores or arranges for the storage of human tissues” for a variety of purposes, including artificial insemination.

The state would not confirm or deny if it considers Nagel a sperm bank at this point, but the big daddy is feeling hot under the collar.

“I don’t want to go to prison,” he says. “I’m supporting all these kids . . . I don’t have time to do prison time.”

Nagel made headlines in June when it was revealed he’d sired nearly two dozen children, with No. 23 on the way. It was later revealed that he’s married — but that hasn’t stopped women from across the country from contacting the busy dad with requests for his seed.

Over 100 women have reached out to Nagel for his famous sperm — donations that are in jeopardy due to the DOH’s demands.