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Besides the fact that the concept of limited panels in the genetic world is outdated, why does a second panel even exist?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 [email protected]