DNA patent ruling could aid women

When the Supreme Court decided on June 13 that unaltered human DNA cannot be patented, it was more than a victory for cancer patients and corporate rivals in the field of genetics; it was a reason to celebrate for Dr. Wayne Grody, a professor at UCLA School of Medicine who assisted in the case that the American Civil Liberties Union (ACLU) brought against Myriad Genetics.

“I’ve been involved with this case for about five years, since the beginning, and I’ve been giving lectures on it,” said Grody, 61, director of the Diagnostic Molecular Pathology Laboratory within the UCLA Medical Center.

“Actually, I was about to start another lecture on this [in Portland], when I got to the podium and about 10 people held up their iPhones to show me that the decision had been reached. I was blindsided and had to improvise the rest of the evening. Maybe the timing wasn’t great, but the news absolutely was.”

The court’s unanimous decision overturned U.S. Patent and Trademark Office policy and invalidated current patents on genes, thereby ending the monopoly of certain genetic tests, including those for types of breast cancer and ovarian cancer that affect a disproportionately large percentage of Ashkenazic women.

Until this decision, roughly 20 percent of human genes were patented, according to the U.S. Patent and Trademark Office. This meant that the holder of the patent could effectively prevent anyone from studying, testing or looking at the gene, which caused great concern among many in the medical community, according to Grody. 

“We never felt comfortable with this idea and tried for many years to get around it — receiving numerous cease-and-desist letters from companies unhappy that we were doing medical genetic tests on genes they had patented,” he said.

When a company patents a gene and has an exclusive right to a test related to it, not only can it set the cost of the test as high as it wishes, but it makes it impossible for someone to get a second opinion. Patients must rely on a single test and hope it is done correctly.

“Many people don’t even know you could patent genes and were shocked when they found out it was possible,” Grody said.

This particular Supreme Court case was filed against Myriad Genetics, a company based in Utah. The genes and tests in question were mutation-location tests on the BRCA1 and BRCA2 genes, which act as significant markers for the likelihood of developing certain types of aggressive breast cancer and ovarian cancer.

Because the Ashkenazic gene pool is less varied than that of the general population, due to the historical pattern of marrying within the faith, three mutations within the BRCA1 and BRCA2 genes are nearly five times more likely to appear in Ashkenazic women than in the general population, according to the National Cancer Institute.

Grody, an Ashkenazic Jew himself who was an expert scientific witness in the Supreme Court case and helped craft various aspects of the ACLU’s legal argument, said Myriad Genetics wasn’t targeted because of any problems within its testing record.

“They’re a first-rate lab. We chose Myriad because breast cancer is such a highly visible disease,” Grody said. “However, the price for the full mutation screening is between $3,500 and $4,000 without insurance. Even if you only have to pay 20 percent, it’s still too much for some people. And until recently, they had no other choice but to test through Myriad.”

Often, the tests are used to decide whether a woman will take prophylactic measures to avoid getting cancer — drastic medical procedures such as a double mastectomy (like the one actress Angelina Jolie underwent recently) and removal of one’s ovaries. Both procedures are irreversible, so many women would like to be able to pursue a second opinion.

Now they can. 

Although it will take many years for companies to build the kind of extensive genetic database that Myriad Genetics has, it’s the beginning of a new era for the genetic testing market — one that’s been decades in the making.

“By the end of the trial, which I had the honor of being able to attend, I felt like the justices really felt uncomfortable with the idea of patenting genes,” Grody said. “And although I was relatively confident that they’d rule in our favor, it was a relief to know that, yes, they did truly understand.”

Mogen David: A Sephardi, Ashkenazi and Orthodox future?

On a recent Saturday morning, at Congregation Mogen David’s Ashkenazic Shabbat service, a blond-haired girl in a shimmery pink sundress tugged at the fringes of a man’s tallit (prayer shawl). The tallit belonged to Alex Katz, and he tried to ignore her entreaties as he led 90 people in the social hall in the prayer for the United States. 

Across a narrow foyer, in the synagogue’s main sanctuary, about 200 people watched as the Torah — enclosed in a cylindrical silver case, in the Sephardic style –— was returned to the ark at the front of the brightly lit room. 

For anyone who knew Mogen David in its heyday, seeing a few hundred people at the synagogue, which occupies most of a full city block on Pico Boulevard west of Beverwil Drive, might seem unimpressive. 

Starting in the 1950s, when the congregation first moved from its original West Adams home to its current location north of Beverlywood, Mogen David was a powerhouse Traditional congregation. Prayers at Mogen David were conducted using an Orthodox siddur (prayer book) and a microphone. Men and women sat together, though only men participated in the service. Under the long tenure of Rabbi Abraham Maron, who died in the early 1980s, the congregation had as many as 1,800 members.

But to anyone who experienced the congregation’s darkest hours, the present-day attendance would be unexpected, even unbelievable. Starting in 2000, when the board decided to become an Orthodox synagogue and install a mechitza (a divider separating men from women) in the main sanctuary, Mogen David entered a tailspin. Board members battled over the synagogue’s direction, a young Orthodox rabbi was hired only to be fired 18 months later, and many longtime supporters became alienated from the congregation, leaving Mogen David languishing with few members and fewer regular attendees. 

“We lost 400 families in two months,” said Rabbi Gabriel Elias, who was and remains Mogen David’s rabbi and executive director. 

Even as recently as a few months ago, the after-effects of the decade-old upheaval were still readily apparent. 

“The first time I walked in here, there were 15 people in a 500-seat shul,” said Katz, who is originally from the East Coast. 

Katz, together with a number of other young Orthodox men and their families, are attempting to revitalize the synagogue, specifically its Ashkenazic service. Earlier this year, Elias hired Katz to serve as cantor and also brought on a young rabbi and law student, Rabbi Todd Davidovits, to serve as spiritual leader. 

Elias, who first came to the synagogue as a weekly Torah reader more than three decades ago and has been rabbi of Mogen David for 20 years, also brought the Sephardic service to the synagogue. 

“I had a vision that there’s a Sephardic community here in Los Angeles that doesn’t have a home,” Elias said in an interview in his office. 

That vision appears to be coming to fruition. Sometime in the late 2000s, a group of about 20 Sephardi Jews approached Elias to ask if it could hold services in the synagogue’s social hall. Elias agreed, and the congregation quickly grew to about 50 or 60 people. In 2009, Elias brought in Rabbi Yehuda Moses, a Judaic studies teacher at Maimonides Academy. Moses has expanded the Sephardic minyan further; an average of 200 people now gather for a typical Shabbat morning. 

In January, the two services switched spaces, with the larger Sephardic service taking over the main sanctuary and the Ashkenazim moving up the half-flight of stairs into the social hall. 

“We might pray separately,” Moses said, “but we do everything else together.”

Practically everyone, not just the rabbis, speaks about unity — achdus, in the parlance of the Ashkenazic newcomers — as the concept driving the new Mogen David. Accordingly, they planned to rid the synagogue kitchen of kitniyot before Passover, even though Sephardic tradition allows for the legumes to be eaten during the holiday. 

The young Ashkenazim treat the half-dozen “old-timers,” men in their 80s and 90s who have hung with Mogen David through the difficult years, with respect, even as the congregation they’re going about building bears little if any resemblance to the services that those men knew. 

Davidovits delivers sermons in shul most weeks and leads a weekly class as well. The hope is, he said, to attract “floaters,” young people who feel disenfranchised at the other Orthodox synagogues in Pico-Robertson. Katz, Davidovits said, is helping to make that happen. 

“A guy turned to me and said, ‘Alex is making it fun for me to pray again,’ ” Davidovits said. 

The synagogue building has other tenants, as well: Elias rents space on the second floor of Mogen David’s adjacent school building to Yeshiva High Tech, an alternative high school program that began last fall with 54 students in the ninth and 10th grades. That building is also home to a nursery school, which is bringing in some money, Elias said. All 65 spaces at the nursery school are full, he said, and there’s a waiting list. 

Whether those partnerships — along with healthy doses of good will, Torah study and tuneful prayers — will be sufficient to bring this embattled synagogue back to life remains to be seen. After all, over the past decade, Mogen David has tried myriad ways to revive itself. 

The synagogue still owns its building outright, but the sizable endowment built up over years by Maron, reportedly worth $4 million just a decade ago, has been completely spent, Elias said. 

Over the years, the synagogue lost money on unsuccessful projects, like the elementary school it established in the 1990s. It folded after just a few years; according to David Schwarcz, an attorney who served as vice president and president of the synagogue in the late 1990s and early 2000s, the synagogue took a “seven-figure loss.” 

The rest of the money disappeared slowly, Schwarcz said, used over time to cover annual deficits. During his time in leadership, Schwarcz said Mogen David raised about $500,000 annually, but spent about $650,000. 

Absent its endowment, Mogen David will have to raise funds to close its budget gap, Elias said. Although he declined to offer specific budget numbers, Elias said the synagogue has about 150 family members today; according to a membership form available online, each would owe about $1,100 in dues — a total of $165,000. 

Schwarcz first joined Mogen David in 1997 and led the effort to install the mechitza in the sanctuary. The mechitza stayed put, but the conflict that drove the young rabbi from his post pushed Schwarcz to leave the synagogue.  

Schwarcz is now a member of Beth Jacob in Beverly Hills, but on a Shabbat in mid-March, he came back to the synagogue to celebrate his son Joseph’s bar mitzvah in the same place he had celebrated those of his two older sons. 

“I wanted to complete the chain for the third bar mitzvah, to be there,” Schwarcz said. 

Schwarcz acknowledged that the young newcomers would face challenges in their efforts to create a new spiritual home for Orthodox Ashkenazi Jews, but still, he said they stood a better chance of success than he did a decade ago. 

“The synagogue has gotten used to being Orthodox, and now it’s more receptive to young Ashkenazi Jews,” Schwarcz said. “The timing is much more propitious at this time than when I tried to do it. We still had an identity crisis when I tried.” 

A Sephardic Celebration

Sephardic, Ashkenazic, Mizrachic, or just out for a good time — whatever their background, Jews poured into the Skirball Cultural Center last Sunday for the first annual Sephardic Arts Festival. The event was a success beyond its organizers’ wildest dreams. Attendance, estimated at more than 4,000, was more than double the anticipated turnout, making it the largest audience for any one-day event since the Skirball opened in April 1996. Despite long lines for shuttle buses and food, the mood of participants — a mix of generations and ethnicities — was festive and good-humored. Many people bumped into relatives and friends — often literally — while searching for seats, program notes or restrooms.

“I think it was a remarkable success,” said Skirball program director Dr. Robert Kirschner, who also said that he had spoken with Moroccan, Yemenite, Turkish, Iraqi, Iranian and Israeli Jews, representing both Sephardic and Mizrachic communities, as well as many Ashkenazic Jews at the festival.

Recognizing the diversity of the Jewish people and promoting the ideal of diversity as an American democratic value was part of the Skirball’s mission, he said. “That’s why this event was so gratifying to us.”

Estimated at about 100,000, Los Angeles’ Sephardic Jews are part of “a vital and emerging community,” Kirschner said. The goal, he said, is to make the festival an annual tradition.

Jordan Elgrably, founder of the National Association of Sephardic Artists, Writer & Intellectuals (NASAWI) and editor of the NASAWI News and the forthcoming Ivri magazine, estimated that about 60 percent of those attending were Ashkenazi Jews.

“I had the impression they were really excited to learn more about this kind of culture. It was a real coming-together all across the board,” said Elgrably.

It was Elgrably who first approached the Skirball about producing the Sephardic Arts Festival. He also lined up the co-sponsors, which, in addition to his own organization, included the Sephardic Educational Center, the Israeli Consulate’s Department for Cultural Affairs, the Consulate General of Spain, and the Center for Jewish Culture and Creativity.

Elgrably also programmed the day’s musical entertainment, which took place in the crowded Skirball courtyard. Among the performers were Judy Frankel, who sang Ladino songs; Adam and Laila Del Monte, who presented Sephardic flamenco music and dance; and Rivka Riki Zabary, who demonstrated Yemenite dances. Israeli singing star Yair Dalal made his Los Angeles debut, improvising on oud and guitar and singing in Judeo-Arabic and Hebrew.

The cultural diversity was equally notable in the art exhibit “Beyond Boundaries,” in which artists from Spain, Turkey, Brazil, Syria, Iran, Morocco, Yemen and Iraq revealed a wide range of styles and subject matter in paintings, sculpture, an installation and print work.

Children engaged in art projects that reflected the festival theme as well — making clay hamsas, henna paintings and Turkish puppets.

Early in the day, it was standing-room-only for “Island of Roses: The Jews of Rhodes in Los Angeles,” the award-winning film by Gregori Viens that documents the history, customs and memories of this little-know group of Sephardic Jews on the Island of Rhodes and in Los Angeles.

The food, prepared by the Skirball culinary staff with input from the Sephardic community, included lamb and chicken kabob, falafel, salmon paella and spiced beef sausage; it ran short as the day wore on and the lines continued to grow.

“We thought it was fabulous,” said Lucienne Aroesty, who was accompanied by four generations of her family — her husband, parents, daughter and granddaughter. An Ashkenazi married to a Sephardic Jew, Aroesty said that the festival “met an incredible need in the community, and the turnout really proved it.”

She hoped to see an expanded program that was more “hands-on” in the future, including food demonstrations and dance and song workshops.

“But, overall, there was a terrific feeling of community,” Aroesty said. “As a Jew, it felt wonderful to be with so many other Jews that were interested in this.”