When it comes to weddings, even the most secular of Jewish couples often reverts to tradition and asks a rabbi to officiate at the ceremony. So if the Jewish community needs to get an important message across to prospective parents at all levels of religious involvement, how better to convey that information than through the rabbi with whom they’ve placed their trust at such a critical life juncture?
That’s the idea behind Couples Aware, a program launched last autumn by the Jewish Genetic Disease Consortium in collaboration with the New York Board of Rabbis and the United Jewish Appeal. Through two-hour presentations by parents of affected children, genetic counselors and rabbis, the program trains clergy to counsel Jewish couples on the importance of screening for recessive genetic diseases before conceiving.
“Rabbis are in a very special position to speak to people before they get pregnant,” said Randy Yudenfriend-Glaser, chair of the JGDC.
Since its inception in October, Couples Aware has been getting its message out by visiting synagogues, seminaries, nurseries and rabbinic meetings, including, most notably, the Central Conference of American Rabbis, one of the country’s largest annual rabbinic assemblies, held in March in New Orleans.
At the spring conference, Chris Dvorak, a genetics counselor from the Tulane University School of Medicine, gave a PowerPoint presentation on the inheritance patterns of recessive diseases and discussed the reproductive options available if couples discover they are carriers for the same disease; Orren Alperstein, president of the Canavan Foundation, spoke personally about losing a child to the neurological disorder that disproportionately affects Ashkenazi Jews; and Rabbi Peter Kasdan tied it all together by leading a brief discussion on counseling young couples to get screened.
“We’re not trying to get rabbis to be doctors,” said Kasdan, a Reform rabbi and the JDRC’s rabbinic adviser. “It’s about trying to get a foot in the door so rabbis understand how important this is, and so they know where to get information when they get home.”
Couples Aware has now trained more than 150 rabbis at eight venues, mostly in the New York area. Initially, the UJA-Federation of New York underwrote the training programs, but in January real estate developer Michael Stoler donated $90,000 to the cause.
Buoyed by the financial boost and the program’s initial successes, the organizers behind Couples Aware are now looking to expand the initiative across the country. They have already developed an online training program to help rabbis in small communities and are in talks with the Jewish Community Centers Association to incorporate Couples Aware into the education programs that the JCCs run for their communities all across North America.
According to Alperstein, who helped spearhead Couples Aware, Reform and Conservative Jewish organizations have shown the most interest in the program so far, and Couples Aware is working with the Jewish Theological Seminary and Hebrew Union College to become a fixture in their academic calendars.
At the same time, Orthodox groups are beginning to join in. In June, for example, Couples Aware presented for the first time at Yeshiva University’s Rabbi Isaac Elchanan Theological Seminary, the country’s leading training ground for Orthodox clergy.
At the event, the seminary arranged for a Y.U. rabbi, rather than someone from Couples Aware, to facilitate a session on the halachic impetus for genetic testing. Although Couples Aware wasn’t leading the show, Alperstein was just happy to be involved.
“The Orthodox community hasn’t been as responsive, so we were really thrilled to join this program at Yeshiva University,” she said. “I think the Orthodox community, which itself is quite large and varied, just has different ways of doing things.”
Regardless of denomination, Diana Gerson, a Reform rabbi who directs the domestic-violence initiative at the New York Board of Rabbis, argues that the program provides a useful primer on genetic disease screening, even for rabbis who already actively advise would-be parents to get tested before conceiving.
“I have always talked to my couples about getting screened, but I never had any informational material or referrals, and I didn’t know of all of the diseases that are on the Jewish panel,” she said. “Couples Aware has given me the critical tools I needed to make my conversations with couples more substantial.”
Contact Daniella Wexler at firstname.lastname@example.org