Beginning-of-Life in Halakha #1: Genetic Testing and Disclosing Genetic Illnesses

From the Dor Yesharim Website

CONFIDENTIALITY

Rav Moshe Feinstein

It is advisable for one preparing to be married, to have himself tested. It is also proper to publicize the fact, via newspapers and other media, that such a test is available. It is clear and certain that absolute secrecy must be maintained to prevent anyone from learning the result of such a test performed on another. The physician must not reveal these to anyone... these tests must be performed in private, and, consequently, it is not proper to schedule these test in large groups as, for example, in Yeshivas, schools, or other similar situations (46).

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 [email protected].

R. Bleich, Tradition 34:1, pg. 79

The first of those problems is whether the carrier state, when ascertained, must be disclosed to a prospective marriage partner. An extreme case-and one in which the answer is obvious-is identification of an individual as a carrier of the gene responsible for Huntington's disease. The gene is dominant and lethal; the disease manifests itself at a comparatively young age and is both debilitating and terminal. It seems quite evident that disclosure of the fact that a prospective marriage partner harbors the gene is mandatory. In fact, it is even arguable that failure to disclose the carrier state for Huntington's disease constitutes a halakhic basis for annulment of the marriage. The certainty of premature interruption of normal marital life may constitute a serious physical defect of the magnitude of a mum gadol, i.e., a major defect, with the result that the marriage may be void ab initio on grounds of kiddushei taut, i.e., error in its inception.

Dr. Fred Rosner

More difficult to resolve is the question as to whether or not an Ashkenazi Jewish woman with the gene for breast cancer BRCA 1 or BRCA 2 is obligated to tell that to a prospective spouse or to her husband K she is already married. Modern rabbinic authorities have not yet ruled on whether it is even appropriate to test for that gene in all Jewish women. It may be reasonable to do so in women with very strong family histories of breast cancer. But to what end? If they are found not to have the gene, then risk of developing breast cancer is still high. But women found to be positive for the gene may wish to take action such as more frequent mammography, prophylactic hormonal treatment, or even prophylactic mastectomies. Current rabbinic authorities need to address these urgent questions to provide guidance on the Jewish religious views on these genetic issues. Should genetic screening include diseases where the clinical outcome is uncertain. For example, in cystic fibrosis, Gaucher's disease, hemophilia and other diseases, early death is rare and the disease expression may be mild, moderate, severe, or life threatening even through adolescence and early adulthood.