September 24, 2022

INBRED BEDOUINS GET GENETIC COUNSELLING

 In a rare example of Israeli and Palestinian cooperation, doctors on both sides of the border are analysing the high proportion of genetic diseases amongst Bedouins. An estimated 140,000 of this nomadic people live in the Negev desert in the south of Israel bordering Gaza. Since about 65% marry first or second cousins, they have significantly higher odds of having children with rare genetic diseases. Two genetics institutes in Beersheba are trying to identify the mutant genes and offer genetic counselling and prenatal testing.

Some of the diseases are terribly disabling: aplasia cutis, in which babies are born with no skin on their skull; severe mental retardation; congenital insensitivity to pain; phocomelia, in which limbs are short and twisted; and eye sockets without eyes. The research has made Israel an important centre for the study of inbreeding.

There are no cures for these diseases, so the counselling is oriented towards aborting disabled children. According to the New York Times, more than 20 couples chose to end their pregnancies last year. Muslim religious leaders are helping by making people aware of the dangers of marrying cousins and the possibility of genetic counselling. They also advise people that Islam allows a woman to abort a child up to four months for health reasons.

The counselling is a two-edged sword, the researchers have learned. In a small society, there is a danger of stigmatising carriers of disease, making marriage harder for them and their families. Illness is also associated with weakness and loss of family honour. Counselling therefore requires great cultural sensitivity and confidentiality.