Ethical pitfall: insurance companies pay for trisomy tests for pregnant women

This has been discussed for a long time, and now a decision has been made: in certain cases, health insurance companies will pay for the blood test that can be used to detect trisomies in unborn babies.

Ethical pitfall: insurance companies pay for trisomy tests for pregnant women

This has been discussed for a long time, and now a decision has been made: in certain cases, health insurance companies will pay for the blood test that can be used to detect trisomies in unborn babies. But there are still concerns, reservations and criticism.

For many parents-to-be, the health of their baby is the most important thing - and the anxiety during pregnancy is correspondingly great. Blood tests that promise knowledge of certain genetic defects in the baby will be paid for by health insurance in certain cases from July 1, 2022. What might seem like a win for many, however, causes associations for the disabled, many churches and doctors to sound the alarm: the topic has been discussed, sometimes heatedly, for years. Experts still see frequent blood tests for trisomy 21 as a fine line - and often as an ethical pitfall.

So-called non-invasive prenatal tests (NIPT) have been available to women since 2012, but so far they have usually had to be paid for themselves, which can be expensive. During the test, a blood sample from the expectant mother is examined for certain genetic defects in the fetus: for example, trisomy 21 (Down syndrome), in which the chromosome 21 is present three times and which is associated with different degrees of physical and mental abnormalities.

If the test result is negative, it can be ruled out with a high degree of probability that the unborn child has trisomy 21. If, on the other hand, it is conspicuous, another intervention must follow in order to make a reliable diagnosis - such as an amniotic fluid test, which is associated with a low risk of miscarriage.

The Federal Joint Committee (G-BA), a body that brings together doctors, health insurance companies and clinics, had already fundamentally decided in 2019 that the NIPT should apply to trisomies 21, 13 and 18 in justified individual cases and after medical advice using information for insured persons statutory health insurance (GKV). One argument: In contrast to older methods, the blood test is without risk for mother and child.

The General Association of the Disabled in Germany (ABiD) is now warning of a "big selection". Social counselor Dennis Riehle recently said that he thinks it is "incompatible with the applicable social security laws for health insurance to fund blood tests for trisomy 21 in the future." The push increases the incentive to carry out genetic diagnostics as standard - a trend that must be prevented.

"The utopian ideology of the ideal human would find more followers. We must not allow any selection, but must put the protection of each individual at the center of our thoughts and actions," said Riehle. Ultimately, every incentive to learn about a disability such as Down syndrome in the growing baby is "a potential decision-making aid to position oneself one-sidedly and uncritically against the child".

Thomas von Ostrowski, board member of the Professional Association of Prenatal Doctors (BVNP), sees a problem in the unclear definition of who the tests should be paid for. He also warns: "Under no circumstances should the NIPT be understood as a screening test for trisomy 21." From his point of view, this could happen given the unclear specifications. The G-BA decision stipulates that the new statutory health insurance benefit will come into effect if other tests have indicated a trisomy - or if a woman and her doctor are convinced that the test in her personal situation is necessary.

Angelika Wolff, an expert in counseling for pregnant women and pregnancy conflicts at Diakonie Germany, said when asked: "We expect that carrying out the NIPT could well become widespread." The regulation refers to the assumption of costs in the case of "risk pregnancies" - but that is not a clearly defined term.

A spokeswoman for the committee emphasized that the G-BA never made the decision easy for itself. In addition to the main argument that the test is a safe alternative to invasive examinations, the fact that the inclusion of the blood test in the statutory health insurance scheme will end an imbalance also plays a role. So far, it was a question of financial resources, whether women could use the test or were dependent on invasive procedures.

Experts see communication and information as the key - and also the greatest difficulty. The G-BA spokeswoman refers to the brochure for insured persons, which must be included in the consultation. This describes which statements are possible with the blood test and which are not and how reliable the test results are. In addition, a conspicuous result must first be further clarified.

Von Ostrowski says: "The central challenge will be talking to the pregnant woman in order to enable her to make a self-determined decision." From his point of view, however, the information for insured persons is contradictory and leaves questions unanswered. Doctors now have an enormous responsibility. Wolff from the Diakonie also emphasizes the great importance of psychosocial counseling in difficult decision-making processes - and sees an increased need for networked cooperation between different disciplines.

But with the new regulation, expectant mothers (and fathers) and society as a whole will also have to deal with a lot. BVNP board member von Ostrowksi is certain: "The expansion of NIPTs as a health insurance service will contribute even more to polarization in society."

Riehle even sees a "societal explosive effect" in the new regulation. However, he considers the focus of the social discussion to be wrong: instead of a debate about prenatal diagnostics, there should be a debate about the image of disability. "Practicing the recognition of the full dignity of every person remains the task of all of us." Wolff from the Diakonie also emphasizes that the aim must be to be able to let all children, including those with a trisomy, grow up well. "There are still many steps to be taken towards a more inclusive society."

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