Q&A: I don't know what my rights are when it comes to prenatal tests.
Are prenatal tests mandatory?
Every person has the right to accept or decline any test offered by her healthcare team. That is based on the concept of autonomy, one of the ethical principles that guide medical care. Some tests in pregnancy are not usually debated, like checking your blood count or blood type. Other tests, like HIV or genetic studies, can have implications that make them more controversial. Technically, your team should get specific permission for any test, but so much in pregnancy is routine that we sometimes forget that a mom-to-be might have concerns about the value, purpose, or outcome of a test.
Three tests that typically require extra discussion are HIV testing, routine ultrasound, and prenatal genetic testing.
HIV testing has become routine in pregnancy because if the mom is infected with the HIV virus, treatment during pregnancy and birth can prevent transmission to the baby. Even moms who consider themselves at very low risk should have HIV testing just to be sure. The risk to the baby of untreated maternal HIV may be the difference between life and death. But again, every person has the right, based on the principle of autonomy, to decline any test, and you have the right to refuse HIV testing if you feel strongly. This is called “informed refusal.”
The purpose of routine ultrasound in pregnancy is to confirm the due date and check for major anatomical problems. Most moms-to-be get routine ultrasound, but it isn’t clearly necessary, and some families choose to decline ultrasound, especially if there isn’t a specific reason that makes it necessary.
Prenatal genetic testing often is equated with screening for Down syndrome (DS), but other conditions can be identified, including genetic conditions like trisomy 13 and 18 (which are much more devastating than DS), congenital heart disease, and spina bifida. In general, the purpose of prenatal genetic testing is to identify which moms are at higher risk for carrying a fetus with a serious condition, so that definitive testing can be offered. Definitive testing (diagnostic testing) could mean amniocentesis or chorionic villi sampling, which carry a small risk of causing a miscarriage. While you don’t have to decide ahead of time if you would consider abortion for a genetic or anatomic condition, if you know you wouldn’t pursue definitive testing, you may not want to take the preliminary test. A normal result is reassuring, but a worrisome result will just cause anxiety without providing useful definitive information.
Learning about your options is the best way to make good decisions during pregnancy. Ask lots of questions so you can choose the sort of testing that is right for you and your family, based on your own personal values and beliefs.