Down syndrome test: "Send a message first and foremost: disabled children are not desirable"

Any pregnant woman in Germany can undergo a blood test – baduming she is willing to pay around 500 euros. Because at the present time the test does not fall under the standard surveys during pregnancy, which are paid for by the legal health insurance companies.The question of whether they will badume costs in the future should be clarified within the Joint Federal Committee (G-BA).

Within this framework of self-administration of doctors, health funds and hospitals, a blood test The reimbursement by the coffers could be such a procedure. Rating normally only examines the medical and economic aspects of cashing out. But in this case, the G-BA accepted very early to also take into account the ethical aspects

A test – and "significant dangers"

But this is not enough for the authors of the position statement. "A debate about what is really the" benefit "of these tests, which makes funding through health insurance, has not been done," they write and pbad in their text several times that & # 39; They have significant doubts about these benefits. On the contrary, as they suggest in their letter, they see significant dangers.

Corinna Rüffer, spokesperson for the Green Party for Disabled People and one of the authors of the summary document, sums up the fears: "In Germany, a relevant step on the road to a control of routine for Down syndrome, "said Rüffer Welt.This would be a" bad step. "" Anyone who creates opportunities to look more and more naturally, that a child is disabled, mostly sends a message disabled children are not desirable. "

In the opinion of Green MPs, the possibility of an early and biologically safe risk tests" the social expectations to use these offers. "But then the parents who have decided against the test "or even knowingly for a handicapped child", "more and more in explanation." Rüffer considers this very dangerous because: "People with Down syndrome do not suffer from trisomy 21, but situations in which they are marginalized, not taken seriously or abused. "Therefore, blood tests on Trisomy 21, which welcomes people with Down syndrome. "

The situation is different for the spokesperson of the FDP Political Group, Christine Aschenberg-Dugnus, who is not involved in the position paper: indeed, a broad social debate should be carried out on ethical issues in the treatment of new prenatal diagnosis procedures, but: "It must remain r that every pregnant woman can decide herself and without discrimination as to whether and what exam she will perform and how she will handle the result, "said Aschenberg-Dugnus. "Such a test should be available to all women and not only to those who can afford it."

It goes without saying that ethical issues are at stake, but "the affected people have to decide, not politics". said the FDP member, adding, "I do not want the" backward role "in women's right to self-determination. In addition, it is important to realize that a ban on such blood tests could not be involved, but only "Can they be offered as cash benefits instead of a risky amniocentesis". In deciding it was "the task of the G-BA."

Axel Gehrke, health policy spokesman of the AfD parliamentary group not yet involved in the debate, accentuated it somewhat differently. He has "problems," says Gehrke, with efforts to limit the possibilities of information through the blood test. Because such a restriction would be "contrary to the other way of treating abortions". Gehrke: "Every year, about 100,000 children are aborted in Germany, although they are likely to be healthy children.I do not want to question the legal situation on abortion. But I see a contradiction, if on the one hand the right of women to self-determination spreads, but on the other hand the right to information of women should be limited to medically relevant issues .

He therefore thinks that "it would be wrong for women to refuse their self-determination on the basis of important information in principle". However, Gehrke welcomes the demand for a debate in the Bundestag: "Such ethical issues belong to parliament."

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There would be much to discuss. Not only the reimbursement as such, but also the question of whether the test should be paid to all pregnant women or only to women belonging to certain risk groups. How many tips should there be? In addition, there is a temporal problem that stems from the early applicability of the test: The clarity of a trisomy 21 could therefore have a pregnant woman before the end of the third month, then she could go with that medical knowledge in psychosocial counseling of pregnancy

The expectant mother could obtain the certificate of counseling, she could undergo a demolition, which she would probably do in a trisomy test 21 positive for medical reasons. But medical reasons play little role in this consultation during the first three months. So, need new counseling rules because of the test?

Another question is after dealing with the disabled. The chairman of the German Ethics Council, Peter Dabrock, complained in 2016 in a first debate on the blood test, how many fetuses are aborted with Down syndrome. On the other hand, Darbock stressed on Deutschlandfunk, "that living with the disabled finds a great acceptance in our society". Peter Darbock sees a "gap that says you want to exclude yourself from the start, and at the same time you see the disability life, you are ready to support it."