The Eastern newspaper reported, citing Sareng Younesi, the head of the specialized laboratory for fetal health, that with the implementation of the population growth law and the deprivation of midwives’ right to screen, 12 children with Down syndrome were born last year.

In the news, it has been reported that Fatemeh Hashemi, the head of the Special Diseases Foundation, has also stated in reference to the policies of the government of Ebrahim Raisi: “Since the implementation of the Youth Population Law and the prevention of prenatal screening, the birth of babies with thalassemia has seen a significant increase.”

Since in Iran it is usually not possible to access accurate statistics on the consequences of the catastrophic laws they pass, there is still no precise data on the number of infants born with specific diseases in recent months. However, these two brief pieces of news indicate that favorable events are not on the horizon.

To be honest, when I was writing this report and followed the consequences of banning screening kits from outside the country, I saw that the government knows well what social and economic consequences such laws have and it seems to intentionally lead society towards collapse.

Delete screening instructions

Like many other laws that are passed, the “Youth Population Law” was also approved by the government. The leader of the Islamic Republic expressed concern about the declining population growth rate in Iran in November 2013 and mentioned the increase in population to 150 million, but did not say anything about his plans for creating welfare and jobs for the population. However, after these talks, the government’s policies went towards initiatives that encouraged people to have more children; from installing billboards to bringing people on television and interviewing them about having more than four children and how happy their families are, to manipulating the content of textbooks. When these advertising policies were not very effective, the Hassan Rouhani government tried to create conditions for increasing the population in the country with other policies, such as limiting access to contraception and restricting screening. In the Raisi government, policies to increase the population became completely unscientific and governmental, and the announcement of the removal of fetal screening and the ban on the entry of screening

According to domestic news agencies, Masoud Pezeshkian, representative of the people of Tabriz, Azarshahr, and Osku, in response to the population control plan and elimination of prenatal screening, said: “Those who sat down and eliminated prenatal screening in the population control plan were not aware of the issue and were only seeking to increase the population, without considering what kind of generation will increase and what kind of people will grow and be born in society. The elimination of prenatal screening has no result other than increasing the number of disabled individuals in society. Currently, the Welfare Organization and the government do not have the capacity to care for the disabled, and it is unclear what will happen and how the costs of caring for them will be covered with the increase in their numbers.”

Masoud Pazhakian accurately pointed out the government’s failures in caring for the disabled. Essentially, the well-being of the disabled is not seen in any of the country’s small or large-scale planning. What facilities are available for the easy mobility of individuals with different disabilities in the cities of the country? What access do they have to special facilities for their daily activities? Are there any job opportunities for them? Unfortunately, the bitter reality is that in Iran, individuals born with a disability are isolated in society and are not provided with any facilities to fulfill their dreams. I can imagine that as you, the current reader of this text, are telling yourself that even in present-day Iran, even those without disabilities see their dreams slipping away…

But let’s go back to the question of what is the story behind the ban on prenatal screening? Mohammad Amin Tabatabaifar, in an interview with the news and analytical website Doroos and Salamat (Fana), has partially answered this question and says: “In the past decades, prenatal screening was performed, especially for Down syndrome, based on the needs of society. However, according to Article 53 of the Youth Population Law, screening was limited and according to this article, screening could only be done upon the request of parents or a specialist physician. Now, the Ministry of Health has gone beyond this law and by suspending the issuance of licenses for the production and import of screening kits during the first three months of pregnancy, they have made it impossible for parents or a specialist physician to request screening. This is because the kits must be available in laboratories in order to be able to perform the screening, and if the kits are not available, whether domestically produced or imported,

According to him, the Ministry of Health did not consult with the Iranian Society of Medical Genetics in this decision and the Society objected to this decision in an official letter and requested a reassessment.

It is not hidden that more than 50 medical scientific organizations have also requested the cancellation of the fetal anomaly screening guidelines by writing a letter; in this letter it is stated: “The aforementioned guidelines are in violation of ethical principles and legal provisions and result in the violation of the rights and health of pregnant women.”

But despite all these warnings and oppositions, this law was not canceled.

Side effects of screening removal

In addition to increasing the statistics of infants born with physical disabilities, eliminating screening can also endanger the lives of pregnant mothers. Mohammad Akrami, the head of the Iranian Society of Medical Genetics, had previously warned that this directive would lead to underground screening tests and the consequences of its implementation would result in an increase in infants with common chromosomal problems. On the other hand, the black market for screening kits has become prosperous and there is no guarantee that these kits are not counterfeit.

On the other hand, we know that according to Article 53 of the Family and Youth Protection Law, mandatory screening of pregnant women, which can prevent the birth of children with Down syndrome and other genetic disorders, has been prohibited and pregnant mothers must personally and at a free rate. However, if a pregnant mother discovers after screening that her child has a genetic defect, she must have written permission from the court for abortion. Considering the situation of courts in Iran and the lengthy process of handling requests, it is possible that this process may take so long that abortion is no longer possible, and this leads many pregnant women to illegal abortions and puts the lives of mothers at risk in these centers.

Furthermore, in Article 56 of the Youth Population Plan, abortion has been declared illegal and the punishment for performing it includes blood money, imprisonment, and revocation of medical license. In December of last year, when the draft of the Penal Code was published, the punishment for abortion was intensified. In this draft, in addition to pregnant women, individuals who assist in abortion – such as doctors, midwives, and drug dealers – will also face punishments such as five to ten years of imprisonment, fines, and revocation of work permits. Additionally, those who advertise abortion, provide information about it on social media, or encourage mothers to have an abortion will face five to fifteen years of imprisonment as punishment.

This is happening while in many countries around the world, plans are being implemented to prevent the rising statistics of maternal mortality, and even towards making screening tests free and accessible.

In addition to developed countries, even third world countries are moving towards informing parents of the possibility of having a child with any kind of disability before they are born, and they have the right to choose whether to bring this child into the world or not. Science is making every effort to discover more accurate findings for screening tests so that children can step into this world without physical or mental disabilities, but in Iran, there is no need for these special scientific facilities to be used and parents are not given the right to choose. The result, according to Mohammad Sadegh Kashfinezhaad, the director general of Fars Welfare in September 2020, is that Iran’s share of annual births of disabled children is 30 to 40 thousand. He added that about 50% of disabilities such as blindness, deafness, mental retardation, etc. are caused by genetic disorders.