A couple of months ago, the German Federal Joint Committee approved the financing of non-invasive prenatal blood tests for detecting trisomies such as Down Syndrome. This practically means that as of 2022 the test is going to be fully covered by health insurance for every pregnancy. The German Down Syndrome community, bioethicists, pro-lifers, and church leaders fear that it will lead to an increase in abortion, with Down Syndrome babies being the primary target. We talked to Cornelia Kaminski about this, and other issues concerning the anti-eugenic and pro-life movement in Germany. Kaminski is the federal chairwoman of the organization Aktion Lebensrecht für Alle (ALfA), the oldest and one of the most prominent German pro-life organizations.
What is the legal frame for eugenic abortion in Germany, and what is the usual prenatal “screening pathway”?
The abortion law says that, in case the mother is expected to suffer either physical or psychological grievances if she carries the pregnancy to term, she is legally allowed to end the pregnancy at any point until term. The previous wording was struck down from the law, since many organizations and NGOs fighting for the rights of the people with disabilities were against it, for obvious reasons. Basically, the same practice has simply been given a different name.
Mothers are offered counselling in relation to the diagnosis of the child. This implies dealing with the medical, psychological and social aspects of the diagnosis. Another expert opinion is also required to confirm the diagnosis. Mothers must be informed about various aspects of the diagnosis, and they have the right to psychological and social counseling. A certain period needs to pass between the diagnosis and counselling. This period is at least three days. It is important to note that the woman does not have to contact the available counselling institutions, she is allowed to refuse. There is no limit past which you are no longer allowed to abort the child. Abortions for medical reasons are not illegal in Germany, whereas abortions for social reasons are officially against the law, but are not punishable if certain requirements are fulfilled.
The official figures on the abortion rate for children with Down syndrome is nine out of ten: every tenth child with Down syndrome survives the prenatal screening pathway in Germany. The usual screening pathway starts with a non-invasive screening blood test in week 9. Not all pregnant women take this test, because it has not been covered by insurance for all, and younger women usually do not take it because they are not “at risk”. In that case, the screening pathway starts at 12 weeks, when mothers are offered an ultrasound, and if something is detected, they are offered an amniocentesis. In any case, amniocentesis is required for a definite diagnosis.
It is important to note that until recently, doctors were allowed to do as many ultrasounds and fetal imaging as they wanted to. However, as of January 1 this year, that has been prohibited. Doctors are now allowed to do an ultrasound solely for the purpose of establishing a prenatal diagnosis. The so-called “baby TV” ultrasound has now been made illegal. And another change is that midwives are no longer allowed to do ultrasounds. This is a big set-back for the pro-life community in Germany. Our own organization used to offer free ultrasounds, just to show women what their child looks like. We are now forbidden to do this.
What is now happening in Germany regarding the introduction of NIPT to the general insurance health care plan?
Two things are now happening in Germany, actually. First, NIPT is going to be offered to each and every woman. All of them are going to be told “it’s just a simple blood test, nothing more than that.” And it will be free. And if the test turns out positive, then mothers will be offered the amniocentesis for a definitive diagnosis.
Second, a few years ago, the German High Court decided that a doctor could be liable for damages if a child with a disability was born, and the doctor had failed to suggest prenatal tests or advise amniocentesis. This is called “child as a damage” in the legal framework. So, doctors can now be held financially responsible and will have to cover the costs of child care. Therefore, doctors are very motivated to offer pregnant women all possible tests. It has become very difficult to refuse this.
What can we expect after this introduction of NIPT and how are German pro-life organizations, specifically Aktion Lebensrecht für Alle e.V., addressing this issue?
We can expect an even greater increase in abortions of children with Down syndrome. Second, there will be a lot less tolerance for women and families who welcome children with Down syndrome, because they are now so “very easily avoidable”. I also fear that sometime soon, health insurance companies will begin to refuse insurance to children with Down syndrome, leaning on the fact that NIPT is now covered by insurance. And since we know that children and adults with Down syndrome tend to have a higher risk for some health issues that other children don’t have as easily or as often, insurance companies will try to avoid that.
This is exactly what will be the focus of our campaign. As a pro-life organization, we will strive to raise awareness of this. The inclusion of NIPT into health insurance is going to have grave consequences on equality and we will persistently warn people about that. We will also continue to raise awareness about the beauty of having children with Down syndrome and the wonderful lives they can have. We will insist that people with Down syndrome enrich our society. We are also working with a doctor who specializes in children with Down Syndrome and children with disabilities in general, and we will advise women to consult with him in case of Down Syndrome diagnosis. We will continue to inform the public and make additional efforts in our activities in social work.