Genetic diseases in the Arab-Israeli sector – especially among Bedouin – cause 2.7 times more infant deaths than in the Jewish sector. Most of the disorders can’t be cured or even treated successfully – resulting in human suffering and heavy medical costs.
The issue was raised in the Knesset Health Committee’s recent discussion on genetic diseases in Arab communities. Between the years 2013 and 2023, there was a trend of decreasing mortality rates, but the rate for 2023 still stands at 5.2 per thousand births compared to 1.9 in the general Israeli population.
The discussion regarding the high rate of genetic diseases in Arab society was initiated by the committee’s acting chairman, MK Yasir Mahmoud Hujeirat, an Israeli Arab geneticist and politician who was elected to the Knesset for the United Arab List in the 2022 elections.
He stressed the gaps in access to health services in this society, the shortage of clinics and tipat halav (well-baby) clinics, and the lack of standards for physicians who receive them.
But the main causes of the genetic disorders are consanguineous marriages – inbreeding, in which first cousins marry and have children, and the high rate of, insufficient response to screening tests, and language barriers in genetic clinics.
The MK has tried to create a database for genetic diseases in Israel with the accompanying need for information privacy and medical confidentiality for patients.
Despite the fact that this type of marriage is discouraged by the major religions, recent studies have estimated that more than a quarter of marriages in the Israeli Arab population (25.9%) are consanguineous.
Among Arabs in Judea and Samaria, it rises to 44.3%, among some of the highest rates in the world. A 2017 article in Reproductive Health Journal reported that up to almost two-thirds of marriages are consanguineous in several Arab countries, such as Jordan, Kuwait, and Saudi Arabia, reaching up to 80% in Egypt.
The role of women's education
One Israeli subgroup is the Israeli Bedouin in the Negev, a semi-nomadic traditional patriarchal society. Women’s education plays a crucial role in the choice of marriage model; a woman with little formal education is more likely to be in a consanguineous marriage.
The establishment of a database is needed to provide reliable and trustworthy information on these diseases to formulate a policy for dealing with them, said Dr. Amihood Singer, head of the Health Ministry’s genetics department. “There are many genetic tests in the health basket that can identify about 300 diseases – many of which are common in Arab society – and there are also tests for couples who are carriers, tests during pregnancy, and child health checks. These should be made accessible, but currently, less than 15% of the Israeli Arab sector undergoes genetic screening tests.”
DR. NOUR ABDELHADI, head of implementation for the Health Ministry’s program for Arab society, said that in the past decade, the genetic causes of many diseases have been discovered worldwide, including in Israel and in Arab society in particular.
The discovery of the genetic factor allows for more accurate counseling and referral for tests in order to avoid the birth of a sick baby. In light of this, genetic institutes report that there is a decrease in the prevalence of genetic diseases, but it is still high among Arab and Bedouin society relative to the general population.
Abdelhadi noted that the main causes of infant mortality in developed countries up to 28 days after birth are congenital malformations, prematurity, and other conditions that arise during pregnancy; in some cases, congenital malformations are due to genetic diseases.
She said that among Muslims, on average, about two more babies died from birth defects per thousand live births than among Jews and others.
According to ministry officials, 43% of Arab infant deaths in 2017-2019 were caused by birth defects, compared to 34% among Jews and others.
Even higher infant mortality rates are recorded among specific groups in Arab society, such as the Bedouin in the Negev and the Druze in the Levant and Golan Heights, where rates of genetic diseases and birth defects are particularly high.
MK Youssef Atauna (Hadash-Ta’al) claimed a low level of service in the illegal and unrecognized Bedouin villages in the Negev and demanded recognition of these villages and upgrading of the clinics there.
MK Ahmed Tibi (also Hadash-Ta’al), who is a gynecologist/obstetrician by profession, also complained about the acute shortage of specialist doctors in this sector, and recommended proactive measures by the nurse at the local Tipat Halav to detect these diseases.
There is a lack of awareness of the danger in consanguineous marriages between cousins and the fact that many couples turn out to be disease carriers, said Prof. Orna Staretz-Chacham, director of the Center for Rare Diseases at Soroka University Medical Center in Beersheba.
For example, there are about 700 Israeli children and adults suffering from the lung disease cystic fibrosis – and over a third of them belong to Arab society, even though Arabs account for only about a fifth of the general population.
Many families have more than one child or adult with the disease. There are new drugs that can significantly improve the quality of life and slow deterioration of the disease that should be made available to victims to help alleviate their suffering.