In Saudi Arabia, if you’re planning to tie the knot, there’s a step you must go through that doesn’t happen anywhere else: You have to get a test for genetic disease. Hereditary blood diseases like sickle cell and beta thalassemia are prevalent in this part of the world, where marriage between cousins is common. A new awareness campaign around genetic disorders aims to reduce the spread of these illnesses.
Saudi Arabia made premarital screening and genetic risk assessment mandatory over a decade ago, hoping that if a couple found out they were at high risk of passing on a hereditary disease to their offspring, they would reevaluate their match. Thousands of couples have called off marriages after finding they were “genetically incompatible.” But just knowing their test results, it turns out, has not been enough. Many couples at risk of passing on genetic diseases go ahead and get married, with the expectation that they will have children.
And so, according to the Saudi Gazette, the country has launched a new campaign to raise awareness about genetic diseases, and what causes them.
In Saudi Arabia, one factor contributing to the rate of genetic disease is that there is a high prevalence of consanguineous marriages, or marriages between family members. It’s a preferred practice, with some 40 per cent of Saudis marrying close relatives. But whatever your social values, it creates a relatively high risk for passing on recessive genetic diseases. When we procreate, stronger genes often naturally win out over diseased ones. But if you have children with a member of your family, you’re reducing the number of healthy genes that can compete with diseased ones. Mating between first cousins is especially problematic, because the gene pool is literally cut in half. And while the country mandates testing for common hereditary diseases, Saudi scientists have also begun uncovering diseases that have never been seen before, let alone made it onto a screening test.
“One of the misconceptions couples have is that premarital testing is sufficient to determine whether they will have children with genetic diseases,” medical student Mohamed Aljuhani, who is leading the campaign in Saudia Arabia, told the Saudi Gazette. “There are so many diseases that are not tested for and can have a high risk of developing. One solution is avoiding marrying relatives, which is a significant factor leading to genetic disorders.”
The awareness campaign is being run by medical students at King Abdulaziz University, under the supervision of the Princess Al-Jawhara Center of Excellence in Research of Hereditary.
Saudi Arabia has poured a lot of money and energy into solving the problem of genetic disease in the country, and its efforts have been well-studied in academia. In this desert nation of 32 million, human genetics research has boomed over the past decade, culminating with the launch of the Saudi Human Genome Program. The Saudi genome team has proposed genetically screening all 150,000 or so couples who plan to marry each year, rather than continue with the current test, which uses biochemical analysis to look for signs of disease in blood samples. A DNA screening would allow them to screen for thousands of diseases with one sample, instead of just a handful.
Other countries with high risk for genetic diseases have undertaken a similar approach. In Iceland, where the small population creates a risk of accidentally falling for your relative, an app helps determine whether people are related. The small Icelandic company deCODE has sequenced the full genomes of thousands of Icelanders, and collected genetic samples from more than 100,000 others in order to identify genetic risks unique to the small Atlantic Ocean island of 330,000 people.
In Saudi Arabia, efforts to push forward into a genetically optimised future have at times clashed with local customs. The successes and challenges of these campaigns in Iceland and Saudi Arabia could provide a future roadmap for the U.S. and other nations, where one day genetic testing could put an end to genetic disease — at least among people who can afford a test.