Within the charedi [rigidly observant] community, there is a feeling that being a genetic carrier carries a stigma. For that reason, a system was developed as part of the Dor Yeshorim (DY) program that involves genetic testing of young adults before they begin to date, but also maintains a degree of anonymity.
The Dor Yeshorim policy on genetic testing stipulates: “Genetic screenings through DY are offered ONLY to unmarried and unengaged individuals who have not previously tested elsewhere. This protocol was implemented in order to avoid complicated situations that arise for already engaged or married couples who are presented with genetic incompatibility and to protect the confidentiality of all participants.”
This type of testing has been extremely effective in communities that rely on matchmakers, or where couples who have been tested consult with DY before becoming seriously involved. The DY approach to screening has helped to dramatically reduce the incidence of genetic diseases such as Tay-Sachs in the Ashkenazi Jewish community.
“Regarding Ashkenazi Jewish genetic screening, because of Dor Yeshorim, and how well the community is educated, it’s easier to talk to patients about it before pregnancy,” said Dr. Efrat Meier-Ginsberg.
Obstetrician/gynecologist Meier-Ginsberg, however, explained that Dor Yeshorim genetic testing may not always be useful. “It is hard as a physician to rely on Dor Yeshorim,” she said. “I don’t have the information on what they tested.”
Since they keep all results anonymous, only revealing whether a particular match is genetically compatible, the particular genetic defect carried by an individual remains a secret. The secrecy is meant to protect people from the stigma of being a carrier, but it also limits the usefulness of testing.
In addition, noted Meier-Ginsberg, “Dor Yeshorim does not test for all the genes. They stopped doing Gaucher disease.”
In the course of testing for carriers of the Gaucher gene, the DY testing inadvertently identified some people who actually had mild forms of the disease, but had not yet been diagnosed. “Then they were stuck,” said Meier-Ginsberg. “What were they supposed to do?”
Since the test was supposed to be anonymous and not identify or reveal what genes were positive, were they permitted to inform the patients, or not? Rabbi Joseph Eckstein, founder and director of Dor Yeshorim has said that the organization did inform those who tested positive for the disease. However, it is unclear whether all who tested for Gaucher’s over the course of several decades were notified, and this has become a point of controversy and contention for the organization.
The unexpected development led to a change in DY testing policy. The organization reasons that “testing the general population (and all DY participants) for Gaucher’s would serve only to create social stigma and discrimination to carriers and those affected, without the benefits that would come with a diagnosis, as asymptomatic or mild symptom patients are no candidates for treatment and report functioning similar to normal individuals who are not affected. For this reason, coupled with the likelihood of many more marriage matches being eliminated due to the high carrier rate, DY offers Gaucher’s test upon request only.”
Gaucher disease can manifest as anywhere from very mild with few or no symptoms, to severe. There is a treatment available called Ceredase, that is used when the disease is serious. It can cost upwards of $200,000 for the drug.
Thus, although testing through Dor Yeshorim can be valuable, as it screens prospective couples for many Jewish genetic disorders, including Tay-Sachs, cystic fibrosis, familial dysautonomia, Canavan disease, glycogen storage disease type I, Bloom syndrome, Fanconi anemia Type C, Neimann Pick, and mucolipidosis type IV, it does not test for Gaucher’s unless requested. Failing to provide individuals with a full panel of Ashkenazi Jewish genetic tests for serious genetic disorders may lead to serious problems for unsuspecting couples years later.
Miryam Z. Wahrman