"Debate" about prenatal testing: When knowledge can unsettle

This has been a matter of debate for years, and now it is law: since July 1st, health insurance companies in Germany have been covering the costs for non-invasive prenatal tests, or NIPT for short.

With a simple blood sample, parents-to-be can obtain information about their child's genetic disabilities in the first few weeks of pregnancy.

The tests are specifically used to search for trisomies, such as Down syndrome.

Criticism of the tests ranges from a lack of reliability to the accusation that they serve to select people and change society's view of people with disabilities.

Proponents point out above all that the tests - in contrast to, for example, the amniotic fluid test - are completely harmless.

Reason enough for a controversial discussion: In the coming weeks we will deal with the medical and ethical implications of prenatal diagnostics and the controversy surrounding the non-invasive tests that have recently been funded in “The Debate”.

"The Debate" is offered by Wissenschaft im Dialog (WiD), the Science Media Center Germany (SMC) and the Technical University of Braunschweig.

Next Tuesday, July 5, at 7 p.m., a current live debate on non-invasive prenatal tests will take place in the Haus der Wissenschaft in Braunschweig, which will also be streamed on this website.

The criticism of the blood tests does not stop

Examinations during pregnancy basically serve the health of the pregnant woman and the early detection of diseases of the embryo: Are there genetic deviations that could indicate a disability or impairment?

Or do the prenatal test and other prenatal diagnostic procedures rather indicate that the embryo was born healthy?

Pregnant women come to the practice of gynecologists and prenatal medicine specialists with such questions.

"The goal of our consultation is always the mature patient," says Alexander Scharf.

The prenatal doctor worked at various hospitals until 2010, most recently as deputy director of the University Women's Hospital in Heidelberg.

Today he works in his own practice.

For Scharf, “mature” means that a mother-to-be is aware of whether she wants any information about possible impairments in her child before the birth.

And if so: how comprehensive the information should be.

Finally: What consequences does she want to draw for herself personally if the examinations show physical or genetic abnormalities?

The advantage of non-invasive tests over invasive prenatal diagnostics such as amniotic fluid testing (amniocentesis) and placenta puncture (chorionic villi biopsy) seems clear at first, because the latter are associated with an – albeit low – risk of miscarriage.

And at least with a view to the diagnosis of Down syndrome, they are relatively accurate, at least for pregnant women aged 40 and over.

With the new regulation, the blood tests for trisomies 13, 18 and 21 are not only available free of charge for older pregnant women or pregnant women with health problems, but also "for the low-risk collective of the almost 800,000 pregnant women who give birth every year - and without any scientific or medical indication," says Spicy.

The latter is a consequence of the vague, imprecise wording chosen by the Federal Joint Committee to justify the claim.

According to the doctor, he assumes that more than 90 percent of a birth cohort of pregnant women take the free test.

“However, because there is no indication in the medical sense and the search is on for almost all pregnant women, there is a high proportion of abnormalities in those who are actually healthy.

The results are only really accurate for ten to 15 percent.

That means: "Only every seventh to eighth test that is abnormal actually means a sick child." The younger the pregnant woman, the less reliable the test is.

Therefore, the test does not offer a diagnosis from which a medical or social consequence can be drawn.

An amniotic fluid test or a placenta puncture are essential for this.

"A test cannot replace these diagnoses, even if this is often claimed," says Scharf.

On the contrary: "I'm afraid the number of points will continue to rise - triggered by NIPT."

from which a medical or social consequence could be drawn.

An amniotic fluid test or a placenta puncture are essential for this.

"A test cannot replace these diagnoses, even if this is often claimed," says Scharf.

On the contrary: "I'm afraid the number of points will continue to rise - triggered by NIPT."

from which a medical or social consequence could be drawn.

An amniotic fluid test or a placenta puncture are essential for this.

"A test cannot replace these diagnoses, even if this is often claimed," says Scharf.

On the contrary: "I'm afraid the number of points will continue to rise - triggered by NIPT."