Rochelle Shoretz and her boyfriend were in love, but they had to make one vital phone call before getting engaged.
They dialed the number of a program in Brooklyn shrouded in secrecy, a center that had kept each of their blood tests on file awaiting just such a moment.
Did they both carry genes that would harm their future children? What would they do if the news was devastating?
The couple, of Ashkenazi Jewish descent, were at greater risk for having children with fatal genetic disorders like Tay-Sachs.
"I was so happy with this wonderful man," the Teaneck, N.J., woman said. "The thought that there could be information introduced into our relationship that could change everything was very disturbing."
Dor Yeshorim revealed they were "compatible." Shoretz, a former law clerk to Justice Ruth Bader Ginsberg, married Jonathan Mirsky. They are now raising two healthy boys.
In a world where high-tech prenatal screening can force pregnant women to make wrenching decisions, Dor Yeshorim aims to prevent carriers of genetic disorders from ever marrying and conceiving a child with a deadly or debilitating illness.
One phone call to the screening program can stop a love match cold — or even prevent two young people from ever meeting and falling in love.
In Orthodox Judaism, where abortion is typically prohibited, the testing has spared tens of thousands of young couples the heartache known by its founder, Brooklyn Rabbi Josef Ekstein. He watched helplessly as four of his 11 children died of Tay-Sachs, a devastating disease that results in mental retardation, convulsions and death at a young age.
In a community where a child's "shidduch" or matchmaking potential is vital, the confidential screening protects families from the possible stigma of being identified as carriers. Blood tests are taken from teens or college students and the results are kept secret until a couple prepares to marry or a matchmaker in the fervently-Orthodox community is poised to introduce a young man and woman. The call to Dor Yeshorim won't reveal who is a carrier. The only information that is released is whether the couple is compatible or not.
Dor Yeshorim, "righteous generation" in Hebrew, has screened 170,000 people in the United States, Israel and other countries since its founding 20 years ago. Typically, 1 in 100 couples are found "incompatible."
Both people must be carriers of the disease for their children to be at risk, a concern in the Ashkenazi Jewish population, which is 10 times more likely to have a Tay-Sachs baby. The rates for Canavan disease, cystic fibrosis and other genetic disorders are also much higher among Jews of Eastern European descent.
In New Jersey, young people in Teaneck, Englewood and Lakewood have undergone the genetic testing, said Frances Berkwits, a genetics counselor who has worked for Dor Yeshorim since its inception. Some high schools invite Dor Yeshorim in for mass screenings.
"The goal for everybody at this point is to prevent the birth of affected children," Berkwits said. "But our goal is a treatment or a cure for these diseases."
The program's success has been outstanding: Since it began two decades ago, not one child with Tay-Sachs has been born to a couple who underwent screening through the program, Berkwits said.
SUCCESSES
In fact, through the efforts of Dor Yeshorim and other screening programs, the incidence of live births of Tay-Sachs babies has been reduced by about 90 percent in the United States and Canada since the 1970s, said Jayne Gershkowitz, executive director of the National Tay-Sachs and Allied Diseases Association, a Boston-based information and support group that praises the efforts of Dor Yeshorim.
Dor Yeshorim isn't the only program for genetic screening for Ashkenazi Jews. Some who are at greater risk of genetic diseases prefer hospital-based testing, in which a more detailed genetic profile emerges.
"There are varying positions on the testing, how it should be done and when it should be done," said Orthodox Rabbi Shmuel Goldin of Congregation Ahavath Torah in Englewood.
Typically the call for the results is made "before the relationship progresses to the point where it would be totally devastating to break off the relationship," Goldin said.
Rachel Yolkut, 25, who is Orthodox and grew up in Teaneck, underwent genetic screening at Holy Name Hospital before she got engaged. Her boyfriend, David, was never tested. Rachel was not a carrier so the couple knew they were not at risk. They were married two years ago.
As a nurse, she wanted to know her complete medical history. But she understands why some Orthodox prefer the confidentiality of Dor Yeshorim, which doesn't even tell those who are screened whether they are carriers — only whether they are compatible with a prospective mate.
"It really depends on where you're coming from," said Yolkut, who lives with her husband and infant daughter in Bala Cynwyd, Pa.
For years, Rochelle Shoretz kept "her number," her secret code for Dor Yeshorim, tucked away with her special papers. Her blood had been taken at the Jewish high school she attended in Brooklyn when she was more focused on play rehearsals than on future motherhood.
Dor Yeshorim kept a record of that number, Rochelle's date of birth and her telephone number, but her name was never recorded. Rochelle and the other young women didn't give much thought to the blood samples taken that day.
"At the time I didn't know much about genetic testing. It wasn't a conversation I had with my parents," Shoretz said. "I held onto my card for years but didn't think much about it until I met my husband."
They met while in college. She attended Barnard College in Manhattan. Her husband, a venture capitalist, was then a student at the University of Maryland.
The call to Dor Yeshorim was a pivotal moment.
Shoretz and her then-boyfriend agreed it was time. "It was a very private conversation. There were no conditions put on the testing," Shoretz said. No calling off wedding plans if the results weren't good.
"We struggled together with what we would do with the results," she said.
"It was very emotional," she said, "much more emotional than I thought."
Shoretz would go through genetic testing two more times, including after she was diagnosed with breast cancer at age 28. Results revealed that she is not a carrier of the gene mutations that are more likely to cause breast and ovarian cancer, however the experience led her to create Sharsheret, Hebrew for chain, because it links young Jewish women battling breast cancer. Shoretz is executive director of the organization that helps women across the country.
HOW IT WORKS
Dor Yeshorim evaluates the couple's compatibility to learn if the pair have the same recessive genes. If both people are carriers of Tay-Sachs, for example, there is a 1 in 4 chance of having a child who will die of the disease by age 3 or 4.
If only one person is a carrier the pair is still compatible. They will never learn through Dor Yeshorim that either of them has the recessive gene because it won't increase the couple's risk of having a sick child. Because the results are kept secret, it spares other family members the scorn of being labeled a carrier.
For many fervently-Orthodox, "the thing they want most in life is to have a healthy, large family," Berkwits said. "They see that as their purpose in life." Any talk of tainted genes could kill marriage prospects for multiple siblings.
Couples in which both people carry the recessive genes are informed of their risks and are given as much counseling as they need to deal with the implications. To date, 1,300 people have been told that they're "incompatible," meaning both partners carry the troublesome genes.
Marriage plans are sometimes called off, Berkwits said.
For couples who are both carriers, there are options for having healthy children when love prevails over genetics or when couples learn about their mismatch after they've tied the knot.
Rivka Falk, a 23-year-old modern Orthodox woman, is gambling that she will take advantage of technology if she and her husband, Daniel Wenger, learn that they are carriers.
"If there was a choice to be made, there would be many consultations with our rabbi and with the doctors," Falk said.
The couple, seniors at Rutgers University, were married this summer without undergoing genetic screening.
As a student at a Jewish high school near Washington, D.C., Falk gave blood samples to Dor Yeshorim, with the plan of matching it against her intended.
"I lost my number," Falk said. "I don't even know where it is."
The couple decided to let love, and not genetics, determine their future.
Reform Rabbi Esther Reed, associate director for Jewish Campus Life at Rutgers University, sees many young Jews in no hurry to learn about their chances of passing on genetic disorders to future generations.
"Most students at Rutgers are not in the mindset of thinking about having a family," Reed said. She typically addresses the issue when a young couple is preparing to marry, making a strong recommendation in favor of testing.
"Sometimes students don't even know about genetic diseases that affect the Jewish community," she said.
It's a familiar lament among experts who fear Jews are becoming complacent because the community's vigilance has so radically reduced the number of children born with inherited disorders.
"Because of the wonderful success of these programs, there are some people whether they are consumers, clergy or in the medical profession who are under the impression that Tay-Sachs is not a threat," said Jayne Gershkowitz, of the National Tay-Sachs and Allied Diseases Association.
"We still see many families who experience this," she warns. "The genes haven't been eradicated."
