Reproductive medicine – prenatal diagnosis: selection is common practice

In the summer, a scandal involving the CEO of the Saxony Association of Statutory Health Insurance Physicians (KV) caused quite a stir. Klaus Heckemann, who has already been working in this position for 20 years, outlined a future scenario in the editorial of the members’ magazine in June in which “(all) women who want to have children (…) would be given a complete mutation search for all known, autosomal recessive, serious diseases is offered”. If the same mutations were found in both parents, the transmission could be prevented using in vitro fertilization and pre-implantation diagnostics, and certain diseases could be ended “within one generation”. However, prenatal diagnostics are still needed for spontaneous mutations.

What is particularly worrying is that his “vision” is part of a cost calculation: With total annual costs of only 750 million euros, such screening is cheaper than expensive therapies. Classify disabilities and chronic illnesses as suffering, even as an additional financial burden on the general public that should be avoided, and banish them from society with the help of modern medicine – even Heckemann himself sums up at the end of the text that the “use of such an opportunity (…) would of course undoubtedly be eugenics,” but “in its best and most humane sense.”

Because of this sentence, among other things, there was a small outcry among the public. Disability rights organizations, memorial sites, self-help organizations for chronically ill people and medical associations criticized Heckemann’s statements and called for his resignation. AbilityWatch, for example, wrote: »As a disability rights organization, we see it as our task to defend the rights and dignity of people with disabilities, which is why we (…) call on the Saxony Association of Statutory Health Insurance Physicians to immediately ensure that people like Dr. Klaus Heckemann will no longer have any responsibility in your organization.” The public protest had an effect: on September 4th, Heckemann was removed from office at a special meeting called for this purpose.

Ideas of eugenics culminated in the crimes of the Nazis

In Germany, the concept of eugenics is firmly linked to the National Socialist murders and forced sterilizations of disabled people, even if the idea of ​​using coercive measures to prevent the reproduction of people labeled as “inferior” is much older. The idea of ​​using pro-natalist incentives to increase the birth rate of certain population groups and to prevent the reproduction of other groups and thus achieve an alleged “improvement” of the population as a whole can already be found in Plato. With Charles Darwin’s theory of evolution and the publications of his cousin Francis Galton, who coined the term “eugenics,” this idea received new impetus and a supposedly scientific underpinning. Publications on “eugenics” were booming from the end of the 19th century, and many countries introduced sterilization programs. “Eugenics” found its sad climax in the crimes of the Nazis. This includes the forced sterilization of around 400,000 people under the “Law for the Prevention of Genetically Diseased Offspring” as well as the murder of 300,000 disabled, mentally ill and addicted people.

The AfD attracted attention with an anti-disabled request

It was often pointed out that Heckemann’s statements were reminiscent of the language used by the Nazis or corresponded to the policies of the AfD (Heckemann had appeared as a speaker for them in the past). The AfD had already caused a stir in 2018 when it attempted to establish a connection between migration, incest and disability with a small inquiry into the development of the number of severely disabled people. However, continuities in eugenic thinking are not just a phenomenon of the extreme right, but can also be seen in the middle of society. This is evident not least in the reports from parents of disabled children, who regularly come across statements like: “Things like that don’t have to be the case these days.”

There is a huge gap between the (justified) public outrage over the Heckemann case and society’s perception of the selective practices that are already taking place. In the end, is it more about his choice of words and the affirmative use of the term eugenics than about the eerie “vision of the future” he creates?

Most pregnant women have trisomies tested

The prenatal search for disabilities has become the norm in pregnancy care at the latest with the cash financing of the non-invasive prenatal test (NIPT). During NIPT, fetal DNA is filtered from the pregnant person’s blood and tested for trisomies 21, 18 and 13. Since trisomies 18 and 13 are much easier to recognize on ultrasound, NIPT is primarily seen as a screening test for trisomy 21. NIPT has no medical benefit as the result does not provide any treatment options. In the debate about cash funding, it was repeatedly said that the NIPT should not become a mass screening for Down syndrome – but so far there has been no investigation at all as to whether this is the case. There is no clear definition of when NIPT should really be billed as a health insurance benefit, as is a scientific study on the effects of health insurance approval. A consultation by the Health Committee in the Bundestag (G-BA) on monitoring is scheduled for October 9th, after the Bundesrat had already passed a corresponding resolution in June 2023. The billing data from health insurance companies show a significant increase in the use of NIPT for trisomies: In the third quarter of 2023, around 83 percent of pregnant women took the test, compared to 60 percent in the same period last year. Contrary to the proclaimed intention, pregnant women seem to understand – and use – the test as part of standard care.

An expansion of prenatal testing is possible

The NIPT can theoretically be extended to a variety of other genetic variations. The G-BA’s decision on cash financing sets a dangerous precedent here. Providers could sue to cover the costs of further tests. Some are already available to patients in Germany as a so-called IGeL service, such as additional testing for sex chromosome abnormalities. How often an abortion occurs after an abnormal result is not recorded. In the 1970s, the German Medical Association defined certain forms of intersex as a permissible reason for an abortion – they still fall under medical indications today.

Prenatal tests for disabilities are already part of medical services in Germany and are becoming increasingly normalized. However, the tests have not yet experienced widespread public scandal. At the same time, there seems to be a lack of awareness about the selective aspects in the field of assisted reproduction, as the lack of public debate on the possible legalization of egg transfer suggests.

Legalization of egg donation promotes selection

The final report of the “Commission on Reproductive Self-Determination and Reproductive Medicine” set up by the federal government has been available since April. In it, Working Group II comes to the conclusion that legalization of egg cell transfer is in principle legally possible, although not absolutely necessary. The FDP is already recruiting cross-party supporters for this project. To date, the Embryo Protection Act prohibits the transfer of other people’s eggs to third parties. Legalizing egg cell transfer would mean reforming the law that currently regulates preimplantation diagnostics – in a very narrow framework compared to other countries. A look abroad shows that the legalization of technologies such as egg transfer is often linked to the advancement of selective practices: starting with the selection of the people from whom egg cells and sperm donation come, based on criteria such as whiteness or educational background, through to those in countries As in Spain, egg donors have long been tested for certain genetic traits, gender-selective embryo selection and other pre-implantation diagnostic tests as standard for egg transfers.

Nobody here would talk about eugenics like Heckemann. And there are good reasons to use this term carefully – after all, the neoliberal service option of a bookable test is something different than a state-controlled program. A development that increasingly normalizes the avoidance of disabled lives should give us pause – even if it is being discussed under other names.