New law in Iran limits screening tests during pregnancy

Image of a screening test posted by Dr Salehi, a gynecologist in Tehran, who talks about her job on Instagram.
Image of a screening test posted by Dr Salehi, a gynecologist in Tehran, who talks about her job on Instagram. © Observers

The Iranian Health Ministry announced on April 16 that doctors and midwives in Iran would be banned from running screening tests in pregnancy – tests which can reveal abnormalities or certain conditions in the fetus, a move that sparked indignation from activists in the country. Pregnancy screenings, often used to detect genetic diseases, can now only be carried out by court order, rendering them largely inaccessible, particularly for the most disadvantaged families. 

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An order passed in 2021 under the header “Family protection and population renewal” was thought to have been forgotten, until the Iranian president signed it into law on April 16. Article 54 of the law prohibits screening tests during pregnancy without a court order. 

Fetal anomaly screenings can allow doctors to detect genetic conditions, such as Edward’s syndrome, Down syndrome or spina bifida, early in pregnancy. Until now, the detection of a grave illness of the fetus is one of two reasons that a person may voluntarily terminate a pregnancy in Iran, the other being that the pregnancy poses a mortal risk to the mother. The operation must be carried out before the fourth month of pregnancy.

The new measure is the latest in an ongoing effort to increase fertility in Iran. Since 2011, Iranian Supreme Leader Ali Khamenei has pushed Iran to improve its population growth rate, which stagnates around 1.3, compared to 2 in neighbouring Pakistan and 2.3 in Iraq. 

To encourage Iranian families, the Islamic Republic has taken different measures such as widespread publicity campaigns, economic incentives for having children, or even restricting the distribution of contraceptives and condoms at family planning centres. In response to the general ineffectiveness of these measures, ultra-conservatives in the Iranian Parliament pushed for restrictions on pregnancy screenings. 

The law passed in 2021 means that testing for fetal abnormalities can only be carried out on the order of a gynecologist, as opposed to a general practitioner or midwife as before. The decision to terminate the pregnancy must now be made by a panel including a judge, government-appointed doctor and a medical jurisprudence expert. 

Photo of a screening test done in Apadana Hospital in Tehran, published in January 2021 by Doctor Mehrshad Jamali. The screening shows intestinal anomalies .
Photo of a screening test done in Apadana Hospital in Tehran, published in January 2021 by Doctor Mehrshad Jamali. The screening shows intestinal anomalies . © Observers

‘Limiting screening tests to gynecologists means depriving thousands of women's access to these tests’

Mahtab (not her real name) is a midwife in a small town in central Iran. 

Fortunately we have not yet received the new orders so we are able to continue our business as usual. We systematically do pregnancy screening in Iran. The first phase is done between eight and 14 weeks of pregnancy, costing around 600,000 toman [around 20 euros]. If everything seems normal in the first phase, the screening ends there. If not, the second phase of tests and screening must be done between 15 to 20 weeks of pregnancy and it would cost about 700.000 toman [around 23 euros]. If the anomalies persist, you must do a third, more precise, phase of screening which carries some risk for the fetus, costing about 5,000,000 toman [around 166 euros].

These tests expose abnormalities and conditions like Down syndrome, Edward’s syndrome, spina bifida and many others. In our region, at least one in around 700 pregnancies has one of these abnormalities, mostly Down Syndrome.

In the last 2 decades that we have done such screenings, the number of children born with these conditions has drastically reduced. And unfortunately, by banning these screenings, there will be many more children born with these conditions. In our region there’s only one gynecologist. In some towns and in dozens of villages, most women do not see a gynecologist for their entire pregnancy; it's us [midwives] or general doctors. Limiting screening tests to gynecologists means depriving thousands of women's access to these tests.

Doctor Fatemeh Salehi, an Iranian gynecologist, shared a video of the first phase of pregnancy screening, occurring in the first 12 weeks of pregnancy. She explains its benefits. Published September 2021.
Doctor Fatemeh Salehi, an Iranian gynecologist, shared a video of the first phase of pregnancy screening, occurring in the first 12 weeks of pregnancy. She explains its benefits. Published September 2021. © Observers

‘These men in the parliament are taking away this option, deciding on behalf of all the pregnant women in Iran’

Kobra Khazali, chairwoman of the women's commission in the "Supreme Council of the Cultural Revolution", which manages Iranian cultural policies, has been telling Iranian media for two years that pregnancy screening tests “are expensive and because they are not accurate, they can amount to killing healthy children". She "commended" the implementation of the law recently in a tweet, which was later deleted.  

Our Observer responded to this argument:

I don’t believe what they say for a second. Even now, none of these tests are covered by insurance, so it’s not a burden on the social security system. Families pay for them all. People in our region are mostly poor, but I have even seen them sell their cars or spend all of their savings or borrow money to run these tests to be sure they will have healthy children.

These men in the parliament are taking away this option, deciding on behalf of all the pregnant women in Iran.

And their claim that these tests are not accurate is a lie too. It’s a standard procedure that we carry out here in our small town, but it’s just as accurate as it is in Paris or New York. We have  99% accuracy, no less.

For example, exactly a week ago I had a pregnant woman who came here from a village near our town. Her first two screenings raised cause for alarm, however in the third phase – which is much more accurate – it showed, fortunately, that the baby is as healthy as it gets. The mother and father were reassured and could go home with peace of mind.

On the other hand, we had three other families in the last two years. For all of them, the first two phases of screening were worrisome but they refused to undergo the third phase of testing. One of the children was unfortunately born with Down syndrome several months ago. The other has hydrocephalus, and the third one died at nine months old after multiple severe heart complications.

The first phase of screening done in Apadana Hospital in Tehran. Dr Mehrshad Jamali explains what they would look for during this phase. Published December 2019.
The first phase of screening done in Apadana Hospital in Tehran. Dr Mehrshad Jamali explains what they would look for during this phase. Published December 2019. © Observers

‘The victims of this law will be the poor families’

Mahtab believes the first victims of this new law will be the patients who are the most disadvantaged:

Middle class or rich families will find their way to do the screenings after the ban – with money you can do whatever you want here. The victims of this law will be the poor families. In many cases, they are less educated, so it is easier to convince them that these tests are not necessary. On another level, sometimes we have to convince them to run these tests because they are expensive for them. They have to sacrifice in order to spend the money here. So when we can no longer push them, and when the situation is even more difficult, these families will not pursue these screenings. There will be more children born with conditions or diseases among the poorest families, making them even poorer, since the conditions generate exorbitant costs in Iran.

The Iranian Parliament reports that about eight or nine thousand legal abortions take place every year. The new law, however, will greatly reduce this figure. Several sources estimate that around 300 to 400 thousand illegal abortions are performed in Iran each year.