Jerusalem — For generations, one Palestinian village just east of Jerusalem watched young adult after young adult lose their lives to a disabling disease.
Eventually, the villagers learned that the previously unnamed killer was cystic fibrosis, a recessive genetic disorder that thickens mucous in the lungs and leads to life-threatening infections. But they failed to grasp that its incidence was high because the village has a particularly high concentration of carriers — and people tended to marry within the village.
Now, Israeli doctors are working to prevent this tragedy from continuing.
Over the last ten years Eitan Kerem, a Jewish doctor from Jerusalem, has worked with a Palestinian physician in the village to create a culture of genetic testing, similar to what exists among Ashkenazi Jews for Tay Sachs disease.
Kerem, head of pediatrics and two specialty centers dealing with genetic diseases at Hadassah Medical Center in Jerusalem, helped the Palestinian physician educate locals about the disease and make blood tests commonplace.
“Most people are now marrying outside the village because of the disease,” Kerem reported. Those who marry within the village consult the local doctor before they do so, and if the proposed match involves two carriers, he helps them consider their options, including calling it off, testing fetuses during pregnancy, or screening embryos before artificial implantation.
This village — which, to avoid stigma, Kerem asked not be identified — is one example of a larger problem of genetic diseases among Palestinians. Such conditions are particularly common due to the tradition of first cousins marriage.
Hadassah’s role in dealing with genetic diseases among Palestinians doesn’t stop at known and researched disorders like cystic fibrosis. Rather, the hospital — founded and still partly funded by the eponymous U.S.-based women’s Zionist organization — is working to extend cutting-edge detective-like work to other disorders.
Orly Elpeleg, head of the genetics department, discovers a new gene on average every 50 days, many of them from Palestinians. “It’s not in the books, as the gene so often hasn’t been seen before,” she said.
Cystic fibrosis is one of the 18 genetic diseases for which Ashkenazi Jews are known to be at heightened risk, so Hadassah has expertise on the clinical level, caring for patients. But because there are more than 1,000 different mutations of the gene that causes cystic fibrosis, finding exactly what went awry in each patient is a challenge, whether the patient is Palestinian or not.
Access to Israeli resources makes the Palestinians unusual, as communities with a high level of cousin marriage rarely have access to top medical facilities. “It’s very unique to have such a high level of academic research for such a population,” said Kerem.
Palestinians arrive at Hadassah, as they do at other Israeli hospitals, through various routes. Residents of Jerusalem require no special permits and are covered by Israel’s state health insurance. From the West Bank and Gaza, some are sent and paid for by the Palestinian Authority; some arrange their own travel permits with Israeli authorities and pay for medical attention, receive it free or benefit from research grants; and some come as part of a healthcare program run and funded by the Peres Center for Peace.