ABU DHABI // The statistics are stark: out of every 1,000 babies born in the UAE, about 75 suffer from a birth defect, the majority of which are of genetic origin.
Those unsettling numbers are forcing a re-examination of the long-held practice of consanguineous marriage - meaning to a blood relative- which is one of the strongest traditions in the country.
It seems, however, that the answers to the problem of increasing genetic disorders need not mean abandoning tradition but rather within advanced and possibly ethically-challenging science.
One of Dubai's leading geneticists, Dr Mahmoud Taleb Al Ali, who is also an Emirati, readily admits it would be a waste of resources to try to discourage interfamily marriages.
"I am a geneticist, I know every principle in genetics and I am married to my cousin," he says. "If you ask me as a scientist, I would say not to allow consanguineous marriages. If you ask me as a person in my culture, I would encourage it. It is part of our identity.
"Tribal living is something that we are very proud of in this country, we are born and brought up with it, and would like to die with it."
The number of genetic diseases diagnosed here stands at more than 270 and the average rate of cousin marriages across the country varies between 40 and 60 per cent.
Figures for Abu Dhabi emirate are slightly lower than the average, with 19.9 per cent of Emirati marriages last year between just first cousins, and 32.3 per cent overall.
According to Dr Al Ali, who is head of Dubai's Centre for Arab Genomic Studies, cousins have one eighth of their genes in common, meaning any child they have together would have a 12.5 per cent higher chance of having a genetic disease (than a child of two unrelated parents).
"Consanguineous marriages is a problem in terms of genetic manipulation of diseases," he says. "But family is important to us, it is something we value. And if the country accepts this, and the people accept that this is the way we should live, then we should be ready to prevent the genetic diseases that go with this."
The 2006 March of Dimes Global Report on Birth Defects ranked the UAE sixth out of 193 countries with children born with birth defects.
Sudan and Saudi Arabia are ranked first and second, followed by Benin, Burkina Faso, Occupied Palestinian Territory and the UAE. Oman is 11, Syria 12, Qatar 16 and Bahrain 17. The lowest rate is 39.7 per 1,000 live births in France, which is almost half of that of the UAE figure. The UK is ninth from bottom, with 43.8.
The report identifies many of the highest rates in poorer countries but "with the exception of countries where common recessive disorders and marriages between first cousins and other close relatives are common".
Instead of focusing attention on reducing the rate of consanguineous marriages, Dr Al Ali says, efforts should be focused on taking measures to reduce the number of "bad genes" in the population. The only way to do this is through premarital screening, prenatal diagnosis and preimplantation genetic diagnosis (PGD).
At present, premarital screening is the main tool used, but experts admit it is a far from perfect solution, and will not work when used in isolation.
"What we need to emphasise is that this should be part of a decision-making process, in terms of actually getting married, not just a procedure for couples to go through," says Dr Farida Al Hosani, manager of the communicable diseases department at the Health Authority - Abu Dhabi (Haad). "We need to raise the awareness of the community and encourage early screening, not just one or two days before the wedding."
Couples are screened for infectious and genetic diseases such as HIV and Aids, hepatitis B and C, the blood disorder thalassaemia and sickle cell anaemia.
Every couple, regardless of nationality, must present a document to court, issued by the relevant health authority, showing they have been tested. The document is valid for three months but the tests are often left until very late, when the chances of it influencing a couple's decision are minimal.
Almost 20,000 people have been screened in Abu Dhabi emirate since April last year. Of these, 1.8 per cent were found to be carriers of the thalassaemia B gene. The disease requires frequent blood transfusions, with symptoms including fatigue, increased risk of infection and bone defects. Some estimates say 8 per cent of the population are carriers.
There are no figures showing what course of action couples took after receiving their results, but Dr Al Hosani says it is incredibly difficult for a couple to call off their wedding at such a late stage.
"It is very difficult, we face such cases where people go ahead [with their marriage]," she says. "Sometimes they decide to take the consequences. We try to explain the consequences and the suffering that might come. In the end, we as healthcare providers cannot stop them from getting married."
In the case of a positive result, the person affected has to choose between sharing the information with their partner, or abandoning their hopes of marrying. The premarital screening report is only issued if a positive result has been shared.
According to a 2009 report by the Centre for Arab Genomic Studies, a respected research body, the UAE is one of a few countries where the rate of consanguineous marriage is rising. But numbers are also increasing in Algeria, Morocco, Oman, Qatar, Saudi Arabia, Sudan and Syria.
In Bahrain, Kuwait, Egypt, Jordan and others, the number is falling.
The report states that maintenance of family structure and property, ease of marital arrangements, better relations with in-laws and financial advantages relating to dowry are all reasons for choosing interfamily marriages.
"It is accepted as part of our culture, so that is not in question," says Dr Al Hosani, an Emirati. "We are not trying to discourage consanguinity, we are trying to encourage them to do the screening."
Another solution in which Dr Al Ali is desperate for the UAE to invest more resources is Preimplantation Genetic Diagnosis (PGD).
This involves in vitro fertilisation screening the fertilised egg before it is implanted in the woman. Defective eggs can be discarded and left to expire naturally in accordance with Islamic law.
Dr Aida Al Aqeel, the Saudi Arabian-based author of Genetic Counselling in the Muslim World - The Challenges, says this sort of genetic engineering is allowed under certain conditions.
According to her 2007 academic paper, an arm of the Muslim World League decided in 1998 that genetic engineering could be used "for prevention, treatment, or amelioration on the condition that such use does not cause further damage".
This method would be most appealing to couples who have already had a child with a genetic disorder, and do not want to take the risk again, says Dr Al Ali, who is also in charge of the Dubai Health Authority's Genetics Centre. "It could give them a healthy baby. If you have already had a child with a genetic illness, you do not want to bring another child into the world who might suffer."
The only remaining option to help couples have a healthy child is prenatal diagnosis, which actually forces more difficult decisions to be made as it involves screening the foetus during pregnancy.
"If they are affected they may choose an abortion," Dr Al Ali says.
Lihadh Al Gazali, a professor in clinical genetics and paediatrics at UAE University, says the debate surrounding abortion makes it easier for couples to choose PGD over prenatal diagnosis, but the success rate was unfortunately lower than conceiving naturally.
Even though UAE law allows a couple to abort a child, Islamic scholars do not always agree, making it a very difficult decision for Muslim couples. "There are two schools of thought regarding Islam and abortion," says Prof Al Gazali. "Some say it is allowed before the spirit is instilled in the body at three months, and some people say it is forbidden even in the first months.
"But preimplantation genetic diagnosis is very much accepted by people in Islam but the problem is it is not easy, and it is expensive. There is a 30 per cent success rate because [the fertilised egg] doesn't always implant."
The law states that a woman can abort her pregnancy if it endangers her life, or if there is evidence the baby will be born with fatal deformities and will not survive. It must be aborted before or during the 17th week of pregnancy.
"This is why PGD is better," Dr Al Ali adds. "But we need to strengthen the facilities here. We need to invest and build state of the art genetic diagnostic facilities."
Prof Al Gazali agreed that the answers lay in advanced science rather than trying to change the marriage traditions in the local population.
"People are still marrying their cousins even though you tell them the science. The important thing is they come forward when they want to marry, especially if they have genetic diseases, there are ways to help them."
The more couples who use science to ensure they have a healthy child, the lower the incidence of genetic diseases will be.
"It will reduce, but it is hard to say eradicate because there will always be new cases. We just need to focus on the right areas."
munderwood@thenational.ae
