Informed decisions are important for a positive and empowering pregnancy and birth experience. Often women only learn about informed decisions in the later stage of their pregnancies, during birth preparation. The sad truth of course is that some women do not even learn about informed decisions then. This means that many women go through most of their pregnancy, and sometimes even the birth, with all types of medical intervention and tests without knowing that they have rights, that by law every test and intervention can only be done after receiving enough information to make an informed decision.
As an exampleת, I’ll be speaking about the nuchal translucency scan (שקיפות עורפית). It is a non-invasive test that is meant to detect down syndrome and some other genetic disorders. The screening in combination with a blood test (serum screening) detects 90% of down-syndrome cases. In Israel, it’s recommended to all women, and often women do not receive enough information to make an informed decision on whether they want to do the test or not.
Did your ob-gyn speak with you about the following statistics?
Let’s say 100.000 women are making the test.
Statistically, around 170 of them will have a baby with down syndrome. Of these women, 153 women will be told that they have a high chance of having a baby with down syndrome (right positive) while 17 women will be told that their baby most likely doesn’t have down syndrome even though the baby has it (wrong negative).
99830 of the women have babies without down syndrome. Most of them will be told they don’t have high chances of having down syndrome (right negative), but around 5% of pregnant women receive a high-risk test result even though their baby is not affected (wrong positive). This is 4991 women.
These women will be told to do further diagnostic tests. In most cases, an amniocentesis (amniotic fluid test) will be recommended. The test has a miscarriage rate of 0.1%-0.3%. This means that 5 – 15 mothers will have a miscarriage of a healthy baby without down syndrome (assuming that all of the women who received a wrong positive test choose to do an amniocentesis).
Did your ob-gyn take into consideration your individual risks and preferences?
What would you do if there are higher chances of having down syndrome according to the nuchal fold screening? Nothing? The amniotic fluid test? Nipt?
What would you do if your baby has down syndrome? Down syndrome without apparent organic disorders or down syndrome with apparent disorders in the heart or in the intestines? Would you do nothing? Choose abortion? Would the knowledge help you emotionally prepare for having a child with down syndrome? Are there in-utero treatments that could help the baby?
What would you do if your baby gets diagnosed with a defect that is most likely deadly already in the belly or right after birth as e.g. trisomy 18? Would you choose a palliative way or an abortion?
I want to emphasize that I am not against doing these tests – absolutely not! What I am against is that women do not get the information they need to make an informed decision; that women are told “these tests are obligatory” (personal experience); that too often women are seen as numbers and not as individual human beings with different preferences and a right to receive information.
𝐘𝐨𝐮𝐫 𝐛𝐨𝐝𝐲, 𝐲𝐨𝐮𝐫 𝐛𝐚𝐛𝐲, 𝐲𝐨𝐮𝐫 𝐜𝐡𝐨𝐢𝐜𝐞!
These are all rights you have:
The right to treatment.
The right to respectful care. The right to patient confidentiality.
The right to privacy.
The right to a companion of choice.
The right to request a different doctor/midwife.
The right to make decisions about your care – every medical treatment/intervention/test requires informed consent! Informed refusal is an option too.
The right to receive enough information to make an informed decision about your medical care.
