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Drug Trials on Children in Institutional Care

When the abuse of children and young people is discussed in the German public, this usually happens with regard to sexualised violence. But minors in West German post-war society have also become victims of another form of abuse: In the 1950s and 1960s, some children who lived in German children’s homes or psychiatric institutions were tested on drugs that had not yet been approved, including vaccines, neuroleptics and psychiatric drugs; and this drug testing took place both in homes run by the state and by confessional institutions.

In the vast majority of cases, this was apparently done without adequate information or the consent of the children or their guardians. Many children and adolescents had to endure painful side effects and still suffer mentally and physically from the late effects of these drugs. This is a scandal that was kept under lock and key for a long time, but which is now receiving increased public attention and media coverage. Scientific studies dealing with the processes in individual institutions are being published. TV documentaries carry the topic to a broad public.

Between the end of the Second World War and 1975 a total of 800,000 children were accommodated in West German children’s homes. In many cases, they were given a blanket statement of ‘mentally deficient’. However, more often than not, there was no reduction in intelligence. Rather, children who were considered ‘difficult’ to bring up were admitted liberally to these institutions. Moreover, illegitimate children or children of single mothers were frequently sent to these homes because they were generally considered ‘neglected’. It is difficult to determine how many of these children were forced to participate in drug tests. Further research is clearly needed. But there is no doubt any more that such tests took place on a fairly large scale.

Medical historians, pharmacologists and ethicists are beginning to examine this form of drug abuse and other experiences of violence associated with medication. New vaccines and (as yet) unapproved drugs have been tested, and many drugs have been used as educational and disciplinary tools. It is not always possible to make a clear distinction between the forms in which drugs were given. But physicians and pharmaceutical companies played a key role in this process.

It was not uncommon for doctors in institutions to have to mediate between a whole host of interests. Therapeutic interests were sometimes mixed up with the desire to succeed scientifically. In addition, many of them wanted to be pedagogically effective in the sense of optimising the operational procedures in the children’s homes. This means, for example, that they administered neuroleptic drugs to sedate and tranquilize the children in order to maintain the system of the “total institution” (Erving Goffman). At the same time, some doctors hoped to gain information about the effectiveness of these drugs. The pharmaceutical companies in turn profited from this. It was all about money and new markets. The overburdened and sometimes insufficiently trained staff was to be relieved by sedating the residents with medication, this led to smoother daily routines at the institutions in question.

In the unjust system of the time, almost any form of medication could be justified. In a sense, there was no instance that could have raised objections in the real interest of the children, but which would have called the system as a whole into question. In this respect, the power of the doctors did not only extend to the amount of dosage and the type of medication, but they also had the power of interpretation. In the 1950s, there was apparently little possibility of fundamentally questioning this sovereignty of medical interpretation. And perhaps even more importantly, this was not considered necessary, even though the Federal Republic had established respect for the dignity of every human being as the supreme constitutional principle.

This conglomeration of medication, power and morality, which had devastating consequences for the children in care, was made possible structurally and institutionally and was thus systemically conditioned. But it was only through individual action that the associated violent structures came to light. Here – as in so many other areas where power structures are at the centre – an inseparable connection between individual, social and institutional ethics becomes apparent.

As has probably already become clear, numerous factors must be taken into account for an ethical assessment of the actions of institutional doctors and pharmaceutical companies: It should not be forgotten that the National Socialist past was largely tabooed in German post-war society. It was therefore all the more muted in institutional and also in many administrative contexts. Authoritarian structures dominated education. And authoritarian structures dominated in education. Documents such as the Nuremberg Code of 1947 played hardly any role in medical practice in Germany. From a legal point of view, many things took place in a grey area, as it was not until 1976 that a really effective amendment of the German Medicines Act was passed. An ethical reflection has to deal with these and many other facets. It must illuminate the contemporary historical background and the ethical standards of research applicable at the time. The simple indication that other moral standards applied at that time does not do justice to the complex situation.

Above all, it will be a matter of signalling to the former children in care that their story is being heard. The responsible actors must be identified, their guilt must be named. But it is also a matter of uncovering the structures and power asymmetries that made drug abuse possible and, from this critical perspective, of sharpening our view of today’s desiderata in the care of children and young people with a mental disability.

Recognizing the suffering of victims is thus inevitably linked to the question of how future suffering can be prevented. When people who have been victims of violence and abuse as children and young people speak up, they often face the painful process of coming to terms with it because they hope that structures that make abuse possible will be changed and that people who have become perpetrators will be called to account. The confrontation with their own history of suffering should help to prevent future abuse.

For this reason, a purely historical view of drug administration in the 1950s and 1960s would also be unsatisfactory. Instead, rooms for reflection in the present and the future must be opened up, in which the question of possible consequences is central. The focus is on the disastrous interaction between power and medication for those affected. Much has changed in the view of people with disabilities. They are guaranteed autonomy, full participation in society and the same human rights as people without disabilities. However, power mechanisms can still be effective. The question to be asked in this perspective is therefore whether and if so, to what extent the liaison between power and medication plays or can play a role in today’s institutions for people with disabilities and how to deal with it.

Questions are to be asked: To what extent is the care of children and young people with disabilities still in danger of being dominated by a medical view? Are there indications that the administration of medication is intended to attempt to eliminate or compensate for structural deficits (e.g. lack of personnel or lack of retreat areas)? What internal or external mechanisms protect residents of facilities for people with disabilities from the abuse of power by medication? Is there a living culture of participation that proves to be so sustainable that abuse of power has no chance? These and other questions arise in the face of the misuse of medication in past decades. Theological ethics is involved here as an advocate of those who have suffered under the power structures. It is necessary to critically face any abuse of power, to fight it and to work constructively for the strengthening of a culture of participation.