A new organization is urging Jewish adults to get genetic screening before they even step under the chuppah and say “I do.”
For $99 for those with insurance, a group called JScreen will facilitate genetic screening for 19 diseases, including Tay-Sachs, Gaucher, Bloom syndrome and Faconi anemia. By going on its website, jscreen.org, clients will fill out a basic profile of themselves and submit a saliva sample.
That sample will be screened through the Emory University School of Medicine. Within four weeks, clients will learn if they are carriers of any of the diseases that tend to be more prevalent in the Ashkenazi Jewish community. If so, they will be offered counseling.
This way, explained Karen Grinzaid, a genetic counselor and senior director for JScreen, a couple can learn about various medical options before the woman becomes pregnant. A couple can decide to have in vitro fertilization rather than becoming pregnant themselves or they can opt for a medical procedure to help their fetus in its early stage.
“So that people can plan on having families, we are trying to make screening easy,” Grinzaid said. “We are really trying to screen people preconception.”
JScreen launched in the beginning of September and is headquartered in Georgia, but hopes to go nationwide.
Hillary Kener is JScreen’s outreach coordinator for the D.C. area. Her job is to make sure there is a JScreen presence at as many Jewish events as possible, from synagogue programs to get-togethers geared at young people at Sixth & I Historic Synagogue to various young professional groups, Kener said. She even plans to visit Jewish preschools, where young parents may not have been screened before having their first child but may be interested in doing so before they have more children.
Other target groups are parents and grandparents. “They will be the ones nagging” young people to get tested, noted Kener.
“We just want to get the word out,” she said.
When people register, they are asked how many Jewish grandparents they have. Genetic testing is recommended for anyone with at least one Jewish grandparent, Grinzald said, adding that they also will test any non-Jews who sign up.
“A lot of people don’t know their ancestry in full,” she said.
Depending on how a person answers the online questions, they will be offered screening for just a few diseases up to a full panel of 80 diseases. Regardless of the number of tests, all that is required is one saliva sample.
There are 19 diseases JScreen recommends that Ashkenazi Jews get screened for. For some of those diseases, but not all, there is no cure.
Nineteen may seem like a lot, Grinzaid said, “But it’s only high because we have the technology to do it.” As science advances and causes of other diseases are discovered, she expects that the number of diseases people can be tested for will increase.
As for Jews having a larger slice of the disease-carrying gene pool, Grinzaid said, “Jews tended to marry within the group,” thereby missing some genetic changes. But there are other ethnicities that also are carriers of a lot of diseases.
Those who carry a particular gene are not the ones who get the disease. However, they are carriers and are likely to have children who are afflicted.
While screening for various diseases has been around for awhile, JScreen is different in that it includes counseling. Other tests available online merely send people their results.
“We do counseling by telephone,” Grinzald said. When necessary, a person will be referred to a genetic counselor from Emory University for more information.
Kener acknowledged that some of her “friends are starting to get engaged, and none of them have mentioned” the need for genetic screening. She is working to change that.
Grinzaid has a dream that everyone will automatically get screened before trying to get pregnant. Someday, she said, people will congratulate a couple when they announce they are getting married, and then immediately say, “Did you get the screening?”
Hopefully, genetic testing “will become the norm,” added Daniel Sperling of the Marcus Foundation, which helps fund JScreen. The Emanuel J. Friedman Philanthropies provides funding for JScreen outreach in this area.
