Saudi Arabia: consanguineous marriage and a case for expanded genetic screening
Health experts suggest actions to systematically reduce the genetic disease burden
The development and deployment of reprogenetics may be the ultimate example of what evolutionary biologists call “gene-culture coevolution.” The latter simply means that a population’s genetic heritage influences the kind of culture produces, while culture in turn affects that population’s reproductive patterns. Chimps, for genetic reasons, cannot produce nearly as vast a range of cultural patterns that humans can. Human cultures, for their part, are extraordinarily diverse and powerfully affect behavior, including by influencing who successfully reproduces and how. “Custom is king of all,” as Herodotus said.
No doubt the cultural area with the most obvious genetic impact is marriage customs. These can be astonishing diverse. Many cultures favor some variation of endogamy, that is marriage within an in-group. This in-group can be defined as an ethno-religious group (Judaism), a caste (within Hinduism), or seemingly almost any other way. With gene sequencing and analysis, we are learning more and more about the profound genetic impact of such divergent marriage customs.
Perhaps the most prominent consequences are medical: a high degree on endogamy, such as cousin marriage or uncle-niece marriage, leads to a higher risk of offpsring developing recessive congenital diseases. I have long thought that reprogenetics will develop most rapidly in nations combining A) biotechnological capacities and B) a high congenital disease burden. Such nations most obviously include Israel, the wealthier Arab states (essentially the Gulf Arab states), and India (at least for the upper classes).
Now a team of Saudi health practitioners, researchers, and policymakers have released a study on the perception of genetic diseases and premarital screening tests in Saudi Arabia, which is highly instructive on thinking in the country.
The authors note that around half of Saudis are involved in consanguineous marriage and “the prevalence of autosomal recessive genetic diseases has increased.” Because of the high prevalence of hereditary disorders, the Saudi government established a premarital screening program in 2004 with mandatory screening for couples planning to marry.
The screening targets diseases that pose a significant health burden on both the government and individuals. Priority diseases include thalassaemia, sickle cell anemia, and infectious diseases, such as hepatitis B and C and HIV. The screening aims to provide carrier or affected couples with the option to proceed with the marriage while understanding the likelihood of their children being affected by the inherited condition and to refer them to a genetic counselor for further guidance.
The study gauged Saudis’ awareness of genetic diseases, premarital screening tests, and genetic counseling via an online questionnaire (2,057 participants). The results are striking:
Over 96% of respondents said they were willing to proceed with genetic testing if they or their partners had a history of genetic disease.
89% said they would call off a wedding if they knew that each child would have a 50% chance or more of developing a genetic disease.
About 91.3% of participants expressed agreement regarding the need to enhance public awareness and knowledge concerning genetic disorders.
Only 47% were aware of the option of avoiding transmitting a genetic illness through preimplantation genetic diagnosis (PGD).
87% agreed that increased government regulations are required to prevent the spread of genetic diseases in affected families.
68% of participants were discouraged from genetic testing because of the cost, while 73.9% said they would be encouraged to proceed with testing if it were covered by the healthcare system.
There was then a high degree of support for using reprogenetics among Saudis for reducing the congenital disease burden.
To address this burden, the authors argue there is a need to address entrenched marital customs in Saudi Arabia favoring consanguineous unions, expand the pre-marriage screening program to cover molecular testing, raising awareness on alternative reproductive options, and expanding coverage of PGD by insurance companies.
The field of reprogenetics is fast-evolving, contested, and global. Different nations will use these emerging technologies in different ways, according to their values and goals, such as broadening reproductive freedom or raising the birth rate. Some nations, such as Saudi Arabia and Israel, have policies in place to systematically reduce the risk of genetic diseases. Many nations currently lack the capacities and resources to engage in assisted reproduction on any significant scale. Just as divergent customs in the past have affected different nations’ genetic heritage, so will differences in the adoption of reproductive technologies. We are entering a new age in the history of gene-culture coevolution.