Awareness drive against genetic diseases challenges social norms

December 25, 2017
Layan Damanhouri

Saudi Gazette

JEDDAH — Premarital screening is vital although not enough to determine the risk of genetic diseases, according to doctors and students launching an awareness campaign on genetic diseases in Jeddah.

Premarital screening for sickle cell anemia and thalassemia is mandatory in the Kingdom and yet some couples are willing to take the risk when they test positive, genetic counselors say.

The decision to go through a marriage even when results are positive is not uncommon, genetic counselors have found in some of their cases.

Medical students at King Abdulaziz University (KAU) under the supervision of the Princess Al-Jawhara Center of Excellence in Research of Hereditary Disorders (PACERHD) launched Gene, a series of public awareness campaigns throughout the year to spread awareness and allow members of the community to learn firsthand from experts about the risk of genetic diseases and factors causing them.

"One of the misconceptions couples have is that premarital testing is sufficient to determine whether they will have children with genetic diseases," says medical student Mohamed Aljuhani, who is leading the campaign.

"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," Aljuhani said.

Cousin marriages are common in the Kingdom where 40 and 60 percent of married couples are relatives, according to the most recent research studies. The most prevalent diseases in the Kingdom are hereditary blood diseases, metabolic disorders, and brain and nervous system abnormalities.

The risk of the child acquiring a disease is 25 percent if both parents are carriers of recessive genes, according to Professor of Genetic Medicine Jumana Al-Aama, who heads the PACHERD.

"After the test results are given to the couple, it's optional to get married or not," she says. "Several factors play their role. It depends how attached are the couple or how the relationship between both families is at that point.”

She added, "There are also cultural traditions in some families where reversing the decision is not easy. Sometimes, families are hesitant when there are no members of the family with genetic disorders. It's hard for them to accept it unlike families with genetically diseased children."

Other logistical factors play a role sometimes such as the expenses for a wedding and other preparations, she said.

"Couples need to take the premarital tests seriously to produce healthy future generations," Reem, a patient with sickle cell anemia who strongly advises against cousin marriages. "They shouldn't go ahead with marriages when the risk of genetic diseases is high."

She founded a Snapchat account in Arabic called Journey of Hope to support other patients with the same disease.

"In a society where cousin marriages are especially common, spreading awareness is important as a preventive measure,” Professor Nabil Bundugji, deputy director of PACHERHD and vice dean of the faculty of medicine at KAU.

"Many families know about the disease but don't know the treatments and campaigns as such help in linking them to the doctors and specialized experts," he said.

"Genetic diseases are prevalent in Saudi Arabia and awareness campaigns contribute significantly to limit them," commented Professor Mahmoud Shaheen, dean of the faculty of medicine at King Abdulaziz University.

"Prevention is always better than treatment. Families having members with genetic disorders suffer greatly and need such awareness campaigns to spread knowledge in a simple and efficient way," he added.

"Changing a society's ways and traditions is definitely challenging," says Ghida Al-Tabsh, a student volunteer.

"However, related couples who overlook the results of premarital testing is a problem for future generations. It's a responsibility to contribute to preventing this from happening. We've found from interacting with different types of people, many don't know cousin marriages can be risky.”

The campaign was held in a number of hospitals and malls and will continue to complete the series in the coming months.

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