The General Association of the Disabled in Germany (ABiD) is now warning of a “large selection”. Social worker Dennis Riehle recently said he thinks it is “incompatible with the applicable Social Security laws for health insurance to fund trisomy 21 blood tests in the future.” The push increases the incentive to make genetic diagnostics standard—a trend that must be prevented.
“The utopian ideology of the ideal man 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. After all, any incentive to learn about a disability such as Down syndrome in a growing baby is “a potential decision aid to position yourself unilaterally and uncritically toward the child.”
screening should be prevented
Thomas von Ostrowski, board member of the Professional Association of Prenatal Doctors (BVNP), sees the problem in the unclear definition of who should pay for the tests. In an interview with dpa, he also warns: “Under no circumstances should NIPT be understood as a screening test for trisomy 21.” From his point of view, it could happen given the unclear specifications. The G-BA decision provides that the new GKV benefit will come into effect if other tests indicate trisomy – or if the woman and her doctor are convinced that the test is necessary in her personal situation.
Angelika Wolff, an expert in pregnancy counseling and pregnancy conflict at Diakonie Germany, said when asked: “We expect that the practice of NIPT could become widespread.” The regulation refers to the assumption of costs in case of “risky pregnancy” – but this is not a clearly defined term.
The spokeswoman of the committee emphasized that 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, an important role is also played by the fact that the inclusion of the blood test in the legal health insurance will end the imbalance. Until now, it has been a question of financial means, whether women can use the test or whether they are dependent on invasive procedures.
The striking result requires further clarification
Experts see the key – but also the biggest difficulty – in communication and information. 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, which are not, and how reliable the test results are. In addition, the striking result must first be further clarified.
Von Ostrowski says, “The central challenge will be talking to the pregnant woman to allow her to make her own decision.” From his point of view, however, the information for policyholders is contradictory and leaves questions unanswered. Doctors now have a huge responsibility. Diakonia’s Wolff also emphasizes the great importance of psychosocial counseling in difficult decision-making processes – and sees an increased need for networked collaboration 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 sure: “The expansion of NIPT as a health insurance service will further contribute to the polarization in society.”
Riehle even sees a “societal explosive effect” in the new regulation. However, he believes that the focus of the social discussion is wrong: instead of discussing prenatal diagnosis, there should be a debate about the image of disability. “Recognizing the full dignity of every person remains the task of all of us.” Diakonia’s Wolff also emphasizes that the goal must be to enable all children, including those with trisomy, to grow up well. “There are still many steps to be taken towards a more inclusive society.”
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