Relatives Marry Despite Risks to Children
Closely-related couples in Syria are choosing to marry even when blood tests detect genetic conditions.
Relatives Marry Despite Risks to Children
Closely-related couples in Syria are choosing to marry even when blood tests detect genetic conditions.
When she turned 17, Nagham Salahiya’s parents announced that they had found a good husband for her – her first cousin.
The couple went to a private clinic for a mandatory pre-marital blood test, which revealed that they both carried a recessive gene for thalassemia, a potentially fatal genetic blood disorder that could affect any children.
Nonetheless, they decided to go ahead with the wedding and married in January this year.
“My family set up this match and it would have shamed them if I refused the man they picked for me,” said Salahiya. “I am clinging to the hope that all our children will be born healthy.”
Dr Ghassan Qanatri, head of a doctors’ association in Idlib in the northwest of Syria, reckons that cosanguinous unions between cousins account for between 35 and 50 per cent of all marriages. Syria’s health ministry gives a lower figure of 20 per cent for marriages involving close relatives, a definition that includes first and second cousins.
Whatever the precise figures, Dr Qanatri says there is a close correlation between such marriages and the incidence of birth defects, although accurate statistics on the prevalence of genetic diseases and their link to cosanguinous marriages are thin on the ground.
Last year, a law was introduced requiring couples to produce a medical certificate before they can be legally married. This was aimed at lowering the prevalence of hereditary diseases, particularly blood disorders such as thalassemia and sickle cell anaemia.
Although a couple can still marry if the results show that one or both partners has a genetic condition, Dr Qanatri said the test means they are aware of it and of the potential consequences for children they may have.
In the case of thalassemia, if both parents are carriers of the recessive gene, there is a 50 per cent chance that their child will also carry the gene and a 25 per cent chance that he or she will develop the condition.
“Blood disorders such as thalassemia are painful, crippling, life-long diseases that currently have no cure,” said Majid Yaziji, director of the Thalassemia Centre in Idlib city. “Patients require regular blood transfusions and extensive, ongoing medical care.”
He added, “The only way to detect the presence of the trait is through a blood test called haemoglobin electrophoresis.”
While couples can go to any medical centre for genetic testing, the health ministry has also opened 20 “marriage clinics”, one or two in each of Syria’s 14 provinces.
Plans are under way to open these clinics in every major Syrian city, said Yaziji.
Marriage clinics and government hospitals charge 43 US dollars for the test, while private hospitals charge up to 170 dollars.
Many couples still choose to marry even when they discover they could pass on genetic disorders.
Nadia Bakri, 16, and her first cousin, Muhsin Bakri, 32, decided to marry even after blood tests from Yaziji’s centre revealed that they both carried the gene for sickle cell anaemia.
In the past six months, Nadia has had two abortions after foetuses tested positive for the blood disorder in prenatal tests.
A fatwa issued by the World Islamic League in 1990 says that Muslims may undergo abortions up to 120 days after conception if an unborn child tests positive for a serious disorder.
“Thousands of other Syrian couples face the same heartbreaking choice as Nadia and Mushin,” said Yaziji. “Mushin was very angry on both occasions, and would yell at our doctors when they tried to tell him he’d been warned about the increased likelihood of these diseases.”
Yaziji said societal and family pressure on couples to marry in spite of the medical risks lead many people, particularly men, to bribe doctors to alter the test results.
“I forged a medical report for my brother stating that our family is free from hereditary diseases,” said Um Ahmed, a nurse at a hospital in Al-Raqqa, northeast of Damascus.
“There are no specific penalties in place so it’s very easy to do,” she added.
Hasan Kherbik, a lawyer from Latakia, is calling for new legislation which would mean medical employees caught altering test results would be punished.
“The government will never prevent outright two cousins from marrying each other, but there should be laws against doctors who alter these medical reports,” said Kherbik.
“Maybe the couple will decide to go ahead with the marriage [regardless], but they should at least know what they are getting into first.”
Meanwhile, experts say that inadequate testing can mean that couples given a clean bill of health later find that they are in fact carrying genes with a risk of hereditary disorder.
According to Qanatri, couples who want more thorough testing may have to travel a long way and be willing to pay extra at a reputable clinic with better facilities.
“There are hereditary diseases that cannot be detected with the tests we are administering at most private hospitals and clinics,” he said. “Hereditary testing is expensive and only the handful of newly-created marriage clinics have the necessary equipment.”
The couple went to a private clinic for a mandatory pre-marital blood test, which revealed that they both carried a recessive gene for thalassemia, a potentially fatal genetic blood disorder that could affect any children.
Nonetheless, they decided to go ahead with the wedding and married in January this year.
“My family set up this match and it would have shamed them if I refused the man they picked for me,” said Salahiya. “I am clinging to the hope that all our children will be born healthy.”
Dr Ghassan Qanatri, head of a doctors’ association in Idlib in the northwest of Syria, reckons that cosanguinous unions between cousins account for between 35 and 50 per cent of all marriages. Syria’s health ministry gives a lower figure of 20 per cent for marriages involving close relatives, a definition that includes first and second cousins.
Whatever the precise figures, Dr Qanatri says there is a close correlation between such marriages and the incidence of birth defects, although accurate statistics on the prevalence of genetic diseases and their link to cosanguinous marriages are thin on the ground.
Last year, a law was introduced requiring couples to produce a medical certificate before they can be legally married. This was aimed at lowering the prevalence of hereditary diseases, particularly blood disorders such as thalassemia and sickle cell anaemia.
Although a couple can still marry if the results show that one or both partners has a genetic condition, Dr Qanatri said the test means they are aware of it and of the potential consequences for children they may have.
In the case of thalassemia, if both parents are carriers of the recessive gene, there is a 50 per cent chance that their child will also carry the gene and a 25 per cent chance that he or she will develop the condition.
“Blood disorders such as thalassemia are painful, crippling, life-long diseases that currently have no cure,” said Majid Yaziji, director of the Thalassemia Centre in Idlib city. “Patients require regular blood transfusions and extensive, ongoing medical care.”
He added, “The only way to detect the presence of the trait is through a blood test called haemoglobin electrophoresis.”
While couples can go to any medical centre for genetic testing, the health ministry has also opened 20 “marriage clinics”, one or two in each of Syria’s 14 provinces.
Plans are under way to open these clinics in every major Syrian city, said Yaziji.
Marriage clinics and government hospitals charge 43 US dollars for the test, while private hospitals charge up to 170 dollars.
Many couples still choose to marry even when they discover they could pass on genetic disorders.
Nadia Bakri, 16, and her first cousin, Muhsin Bakri, 32, decided to marry even after blood tests from Yaziji’s centre revealed that they both carried the gene for sickle cell anaemia.
In the past six months, Nadia has had two abortions after foetuses tested positive for the blood disorder in prenatal tests.
A fatwa issued by the World Islamic League in 1990 says that Muslims may undergo abortions up to 120 days after conception if an unborn child tests positive for a serious disorder.
“Thousands of other Syrian couples face the same heartbreaking choice as Nadia and Mushin,” said Yaziji. “Mushin was very angry on both occasions, and would yell at our doctors when they tried to tell him he’d been warned about the increased likelihood of these diseases.”
Yaziji said societal and family pressure on couples to marry in spite of the medical risks lead many people, particularly men, to bribe doctors to alter the test results.
“I forged a medical report for my brother stating that our family is free from hereditary diseases,” said Um Ahmed, a nurse at a hospital in Al-Raqqa, northeast of Damascus.
“There are no specific penalties in place so it’s very easy to do,” she added.
Hasan Kherbik, a lawyer from Latakia, is calling for new legislation which would mean medical employees caught altering test results would be punished.
“The government will never prevent outright two cousins from marrying each other, but there should be laws against doctors who alter these medical reports,” said Kherbik.
“Maybe the couple will decide to go ahead with the marriage [regardless], but they should at least know what they are getting into first.”
Meanwhile, experts say that inadequate testing can mean that couples given a clean bill of health later find that they are in fact carrying genes with a risk of hereditary disorder.
According to Qanatri, couples who want more thorough testing may have to travel a long way and be willing to pay extra at a reputable clinic with better facilities.
“There are hereditary diseases that cannot be detected with the tests we are administering at most private hospitals and clinics,” he said. “Hereditary testing is expensive and only the handful of newly-created marriage clinics have the necessary equipment.”
