The State Welfare Organization plans to increase the number of genetic counseling centers to help prevent congenital defects on priority, in the next five-year economic development plan (2016-21), says head of SWO, Anoushiravan Mohseni Bandpei.
“Preventing congenital defects at birth is one of the main areas of focus. The SWO has been setting up genetic counseling centers for years to help address the problem,” he said, Mehr News Agency reported.
Tens of children are born each year with genetic disorders, caused by mutations in genes. Every person has two sets of most of the genes, one inherited from each parent. When one or more of the genes are abnormal (have mutations), it can cause diseases.
Prenatal screening was first introduced in the world almost four decades ago, yet gaps exist in public knowledge about the screening program, particularly in remote and underprivileged areas.
For years, effective communication and counseling strategies were adopted in Iran to control a prevalent genetic health problem, thalassemia major, through the primary healthcare system. But, while the general public is familiar with more widespread disorders like thalassemia and Down syndrome, they are not aware of uncommon conditions such as Edward’s syndrome or Patau syndrome.
“There are families who are unaware of the existing technologies for prenatal diagnosis and treatment,” Bandpei said, stressing that the SWO is striving to address the issues.
Currently, there are 200 provincial counseling centers and more will be opened by the end of the current Iranian year (March 20, 2016).
Counseling
Genetic counseling evaluates family history and medical records, prescribes genetic tests, and assesses the results of such investigations to determine whether parents or the baby carry genes for certain inherited disorders and help them understand and reach decisions on the next course of action.
Noting that genetic tests are expensive, he hoped the SWO will receive funding to help check the birth of children born with disabilities.
The number of children with genetic defects increased by 5% during 2013-2014. At present, there are 1.1 million people with disabilities in the country. The number increases by 20-30% annually, including 40,000 severely handicapped.
The figures should spur new preventive strategies that mandate premarital and post-marital genetic tests for couples. If a couple is a carrier of the same disease, prenatal diagnosis can help determine if the fetus will be affected or not.
“Bearing in mind that 400,000 of the disabled population live in rural areas, independent educational and counseling facilities must be established for such regions,” he said.
