QGP has recently sequenced the genes of 30,000 citizens and 3,000 Arab residents to help predict diseases.
He opened the envelope, fully expecting the result. He was hopeful it would be different, but it didn’t matter all the same.
“POSITIVE for mutations in HBB gene.”
Jassim*, 28, was not shocked that he had sickle cell anaemia, but he had hoped the genetic mutation that makes it hereditary wouldn’t be present. He bore the news of his genetic condition and walked to his car, a defeated man.
His mother, Fatima, had been praying all night for a different result. He didn’t know how to face her.
“I am at the time of my life where I am building a family, getting married,” Jassim told Doha News.
The majlis he headed to was packed. People carried gifts large and small approaching Jassim’s family. He was about to wed and his family were expecting the news. Although Qatari law does not prohibit marriage based on genetic compatibility, this wasn’t the news he was expecting to tell his parents.
Screening and genetic tests
Screening before marriage is an increasingly common practice in Qatar. In fact, couples would voluntarily get screenings as far back as the 90s.
Although not enforced strictly, screening was signed into law in 2009, and became widespread when testing facilities increased.
With the prevalence of diseases arising from consanguineous marriages (cousin marriages), the health ministry strongly encourages and advocates for health check-ups.
The genetic tests that the screening used to look for were limited to a couple of hundred STIs and autoimmune diseases.
While currently not used for pre-marriage testing, new technology Qchip1, a micro-array technology developed for research purposes by analysing Qatar Genome Data, could potentially be used to screen for several genetic diseases.
With the addition of the recent sequencing of the Qatari population, this technology is expected to be stronger than ever.
No law mandates the dissolution of a union should there be genetic incompatibility issues; however, since the introduction of the possibility of screening, some families have taken steps like avoiding having children so as not to pass down heritable conditions.
For its part, the government has been taking measures to advocate for “the continuity of cohesive families and large households”, which it sees as “crucial to the national vision”, according to Qatar’s National Development Strategy Report.
Expansion of the Qatar Genome Project
While the new technology is in its early phase, its capacity to test for diseases worries some about how consequential it would be when making decisions like marriage and building families in the future.
The technology itself was developed through the collaboration of various medical organisations, governmental bodies and research facilities.
Lead researcher Dr. Juan Flores and his team worked on the Qatar Genome Programme (an affiliate of the Sidra Medical and Research Center) by sequencing the entire makeup of the population of Qataris over six years.
Following years of large-scale data collection and research, they published results and found applications from their discussion in the form of QChip1.
“The Qatar Genome Project showed us that Mendelian (Single-gene) disorders are present across this small population, and 85% of these variants are not as prevalent elsewhere,” said Dr. Flores.
The expert wanted to especially focus on Mendelian disorders or disorders that arise from changes in the DNA of a particular gene because they often have unpredictable inheritance pattern that can be tamed by a large set of location specific data.
Dr. Flores researched the Qchip1 by considering 3438 variants of single-gene disorders including the more common cystic fibrosis, sickle cell anemia.
“The tribal nature of marriages and the resulting limited gene pool and higher risk of homozygosity necessitates a better screening process,” he continues. “Due to the public service that our technology provides, we have tried to make the device available for a cost less than a 100 dollars per sample”.
Marriage at the forefront
As the hidiya (customary gift ceremony) concludes at the majlis, Jassim’s father opens a tape of his own wedding on the TV screen. It shows Bedouin ritual dances where men gather, sing and clap their hands, blessing the couple for a happy life. The singing continues
Oh God, may it be blessed and joyful,
The boy and girl’s wedding.
May she have a child
And be guided left and right.
Jassim’s father, Khaled*, beams with a smile as his memories jogged from the small clip, reminiscing about the old times as Jassim still tries to find a way to break the news to the family.
While others talk about what piece of jewelry mahr (a wedding custom gift from the groom to the bride) to give, Khalid tells his mother in another room. After telling his family, his mother requested the bride to go through the same steps. And while the bride doesn’t carry any worrying recessive genes, the decision to have children will loom over them.
“Marriages are rarely if ever, halted by health incompatibility,” said Susie Kilshaw, an anthropologist at the University of College London who has researched Consanguineous marriages in the Gulf.
“There is bargaining involved, including not having children, because the strength, closeness, and unity of marrying within the family is seen as too great.”
Consanguinity is usually defined as the intermarriage of two individuals who have at least one ancestor in common, the ancestor being no more distant than a great-great-grandparent.
54% of Qatari marriages are consanguineous.
Many literature reviews show that there is a small but present danger put-forth by such marriages.
There is a predicted “additional 3.7% mortality [probability] from approximately 28 weeks gestation to 10 – 12 years of age from children produced by such unions as well as a median risk of 3.3% regarding birth defects (i.e. a total additional risk of 7% pre-reproductive morbidity or mortality).”
These risks are more pronounced in first cousin marriages which would be 26.7% of the Qatari household population. This is because first cousins share one-eighth of the same genes, meaning they are more likely to have inherited a faulty gene from a common ancestor, which they may both pass on to a child.
That is not to say there are no benefits to choosing internal marriage. The stability and peaceful cohesion it provides for an already small population is unmatchable. And, as the family is involved when choosing marriage partners, this bargaining is instilled from a younger age.
“I remember when I was a kid playing with my extended family, my brothers would joke, ‘Oh, you’re going to marry your cousin, let’s match them up, they’re cute!’” Sara* told Doha News.
“From the opposite sex, I met with my cousins more regularly in my life than anyone else. Sometimes, it makes sense to marry inside because there is little opportunity for conflict between in-laws.”
She recalls when her brother heard similar news to that of Jassim. At 16, his increasing tiredness, shortness of breath, and stomach pain got him to different hospitals with inaccurate diagnoses. Finally, he discovered that he had Thalassemia – a blood disorder resulting from an inadequate amount of hemoglobin.
“He didn’t take it well the first few days. He didn’t want to talk to anyone and locked himself in his room,” she said.
Plenty of measures
The NHS claims that this genetic disease could be life-threatening if managed incorrectly, becoming more dangerous if both parents have it.
“Without close monitoring and regular treatment, the most severe types can cause serious organ damage and be life-threatening.”
Another serious concern amongst fiancées is hiding pre-existing conditions. Most people with these genetic diseases are not treated favourably by society. The taboo encourages some to hide and even lie when asked if they have any ailments.
“If you have anything and refuse to tell me, that’s a problem,” said Sara. “Nobody wants to see their child die, and I would feel better knowing than not knowing.”
Preventative measures could be taken to avoid passing down some of the diseases. One such way that has received a growing interest is In-vitro fertilisation, in which fertilisation happens in a culture medium within a laboratory where it can be monitored and adjusted.
“I used to think it was an Evil eye that caused my child his problems,” said Dana*, Sara’s mother.
Whenever she felt like someone was giving nathar (the eye), she hid her son. She felt like people were jealous of her and her family and that they would intentionally or unintentionally harm them with just a glance. So, for a long time she felt that she was responsible for her son’s situation.
“It is all about Allah’s will,” she continued. “Allah provides you with all you have, and he takes it away and gives you something else. You have to be happy with what you have. You would get a fully healthy child, but he will be age 20 and get in a traffic accident. Last week, I went to a funeral to say sorry for a family that lost their son in an accident.”
Other Qataris have various explanations for why there is an above average genetic problems in the region.
Some suggest the Gulf War and the chemicals put in foods and water affected the entire region, while others say mercury in vaccinations and even MMR is responsible.
Either way, many agree that if there is incompatibility, more can be done.
“There should be some sort of support system, mentally and physically, so that they don’t shock you with the news,” Sara told Doha News.