The development of genetic counselling in the GDR

Genetic counselling was an important part of human genetics and clearly connected to questions of reproduction, as its aims were to avoid the birth of disabled or chronically ill children and to encourage procreation of people with unfounded fears of having disabled or chronically ill children. Therefore, I will show how the establishment of genetic counselling in the GDR was connected to: first, the development of human genetics; second, reproductive politics; third, the extension of prenatal care; and fourth, the position of people with a disability in society. In the aftermath of World War II, the science of human heredity had a difficult time in the GDR. Human heredity was understood to be connected to Nazi race politics; none of the former chairs or university institutes for racial hygiene or heredity and race biology continued their work; and the doctrine of Lysenko, which had been adopted from the Soviet Union, proclaimed the inheritance of acquired characteristics as a fact and denounced genetics as pseudoscience (Doetz 2017).14 Nevertheless, East German scientists practised human genetic research in some niches, and the concept of hereditary diseases existed in spite of Lysenko.

Although the complete revocation in 1946 of the Nazi’s Law for the Prevention of Hereditarily Diseased Offspring (Gesetz zur Verhütung erbkranken Nachwuchses) in the Soviet Occupation Zone had marked a clear break with Nazi sterilisation politics, eugenic ideas did not completely disappear from the GDR. There were physicians and biologists who referred positively to the term ‘eugenics’ until the 1970s,15 although the term was often used to refer to individual families and not to society at large (Doetz 2017).16 The 1950 ‘Law Concerning the Protection of Mother and Child and the Rights of Women’ (Gesetz über den Mutter- und Kinderschutz und die Rechte der Frau) allowed abortion if one parent was ‘burdened with a severe hereditary disease’ (mit schwerer Erbkrankheit belastet).17 In the 1960s, physicians and biologists interested in (human) genetics started networking and lobbying. In addition, the first chromosome laboratories started operating in some clinics (Doetz 2017). At the end of the decade, a negotiation process began between biologists, doctors and the GDR Ministry of Health to create the ‘human genetics research project’ (‘Forschungsprojekt Humangenetik’). This entailed that the ministry allocated dedicated (although limited) funding to clinical departments and laboratories engaged with genetic diseases, although these institutions also depended on the goodwill and resources of local health authorities.18 Nevertheless, this research project was very important for building up a network for all physicians and biologists who worked in this field. There were regular meetings, lectures and—to a point—the possibility of international exchange. The ‘Forschungsprojekt Humangenetik’ took on the tasks of a professional society of human genetics. One of its main goals was the establishment of a nationwide genetic family counselling service. Considering the state’s limited resources, this plan was more feasible than other ambitious missions, such as a proposed genetic population register (Weisemann 1997, 30–39; Doetz 2021).19

Counselling for pregnant women (Schwangerenberatung) had a long tradition in the GDR. Established in the 1950s, it comprised medical examinations, social care, hygienic education and mental prenatal programmes. Women were motivated to participate by means of material incentives. The effect was an impressive decline in infant and maternal death rates and the registration (and control) of most pregnant women.20 Thus, the close surveillance of pregnancy was not a new development when amniocentesis and genetic counselling were established in the 1970s. With the introduction of amniocentesis, prenatal chromosome examinations became possible and, hence, the abortion of a fetus with a chromosomal aberration (Weise, Bernoth, and Quent 1976). The well-developed system of prenatal care was an important link as many referrals for genetic counselling came from gynaecologists and pregnancy counselling centres (Seidel 1984, 28; Janitzky 1990, 35; Marx 1990, 20). Women were already used to the surveillance of their pregnancies and likely considered these new tests and consultations yet another examination. Moreover, the term ‘counselling’ was already established in the field of reproduction and encompassed a whole cluster of different activities beyond communication, such as physical examinations and prenatal tests.

In 1974, two pilot genetic counselling centres in Jena and Magdeburg started operating. They were in strikingly different settings: the centre in Magdeburg was located at the paediatric clinic of the Medical Academy, while the centre in Jena was in the Institute for Anthropology of the Friedrich-Schiller University.21 By 1981, the latter had become the leading institution for genetic counselling in the GDR, amid a nationwide network established in the 1970s and 1980s. By 1985, there were 20 genetic counselling services in the GDR, and each district of the country had at least one clinic. They were located at universities, medical academies or district hospitals and connected with laboratories (Doetz 2017). Most were part of clinical institutions—a fact understood to facilitate interdisciplinary exchange between cytogenetics, paediatrics, gynaecology and other medical disciplines which were relevant for the cases in question (Gedschold and Steinbicker 1984). The centralised organisation of GDR healthcare enabled task-sharing between the single counselling centres (eg, the counselling centre in Greifswald specialised in the examination of genetic metabolic disorders). However, despite centralised control, there were considerable differences in the level of care between the individual districts: in 1985, the districts of Gera, Berlin, Neubrandenburg, Leipzig and Rostock recorded one consultation per 1500–1800 inhabitants; while the districts Schwerin, Dresden and Potsdam recorded one per 5600–12 000; and the Karl-Marx-Stadt one per 32 000. These differences were caused by variations in limited local resources, such as a lack of staff, space and equipment. Genetic counselling centres depended on district health authorities or university administrations and their priorities and possibilities (Doetz 2017; Doetz 2021, 406).

The new genetic counselling clinics aimed to engage all people who were considered to be at ‘risk’: that is, families with a disabled child, people who worried about a possible ‘genetic burden’ in their family, or people who knew about such a history and now wanted to get married. The target group also included older couples, people who were involuntarily childless, and relatives who wanted to marry each other.22 Hence, the establishment of genetic counselling practices cannot be separated from the position of people with a disability in society, the development of reproductive rights and new diagnostic techniques.

Although the concept of ‘socialist humanism’ pronounced respect for the dignity of people with a disability and the development of their personality, in practice these people were often confronted with social exclusion (Löffelbein 2021).23 The GDR had its roots in the German labour movement and defined itself as a ‘Workers’ and Peasants’ State’. Consequently, it placed high significance on the ability to work. This shaped the way the state dealt with people with a disability.24 Regardless of its cause, children understood to have a disability were categorised as ‘eligible for education’ or ‘non-eligible for education’. While the former got special rehabilitation to integrate them into the work process, the latter were excluded from the school system and usually received no special support. In addition, there was a shortage of care facilities and placement options for those deemed not to be educatable. In the mid-1960s, this practice came under increasing criticism and resulted in a reform process at the end of the decade that stagnated in many cases. Moreover, children classified as ‘non-eligible’ still remained. They often had to live in special nursing homes or in psychiatric clinics. Given the often far-from-pleasant living conditions in those places, which suffered from a lack of resources, it is hardly surprising that many equated disability with suffering.25 Thus, the situation of people with a disability in the GDR was characterised by structural problems, a lack of state interest, and an ideology oscillating between the exaggeration of the ability to work, equating disability with suffering, and ‘socialist humanism’. This concept, in turn, allowed parents of children with a disability or chronic disease to advocate for their children’s interests. Sometimes, parents were successful in this.26

How did the position of people with a disability in the GDR affect genetic counselling? First, there was a decisive concurrence of the reform process (though stagnating) and the introduction of prenatal testing and establishment of genetic counselling clinics. Although this concurrence was not explicitly referred to in the promotion of genetic counselling, cost-benefit calculations occasionally were. In 1973, for example, human geneticist (and head of the ‘Forschungsprojekt Humangenetik’) Bernhard Wittwer announced that for every 500 people, at least 1 was involved in the care of a person with a serious hereditary illness. This showed, he believed, ‘what a significant medical, psychological, ethical and, not least, economic problem awaits a solution here’ (Wittwer 1973, 436). However, ableist attitudes and insufficient state support did not automatically lead to an abortion or renunciation of a child, as I will show later.

In the 1970s and 1980s, genetic counselling was clearly connected to questions of reproduction, as its aims were to avoid the birth of disabled or chronically ill children and to encourage people with unfounded fears of having disabled or chronically ill children to procreate. As Bernhard Wittwer, the first head of the previously mentioned research project ‘human genetics’ wrote:

On the one hand, genetic counselling can dissipate an unfounded fear of malformed children. On the other hand, a certain proportion of genetic disorders can be avoided by means of a well-founded decision not to have children (Wittwer 1973, 443).27

While Wittwer also argued in terms of population (‘a certain proportion of genetic disorders can be avoided’), the cytogeneticist Hannelore Körner and the paediatrician Ernst Ludwig Grauel stressed the individual character of genetic counselling:

The aim of our genetic counselling is to allay the fears of parents who are unprovokedly afraid of having malformed offspring, to prevent the conception and birth of genetically diseased children as far as possible, and to do everything in our power to help parents with genetic problems to have healthy offspring. It is a purely individual prophylaxis, which exclusively concerns the family (Körner and Grauel 1974, 269).

Consequently, genetic counselling brought together normative ideas of a healthy society and the pronatalist efforts of the socialist state. Attempting to draw a contrast to eugenic concepts of the first half of the twentieth century, human geneticists in the GDR emphasised its individual and voluntary character. Nevertheless, population-genetic objectives (ie, the notion that prepregnancy and prenatal testing and counselling might lower the incidence of genetic conditions) were still present, especially if state institutions were addressed or involved.28 This notion was, for example, reinforced in a statement by several scientists of the ‘Forschungsprojekt Humangenetik’. Writing in one of the main medical journals of the GDR, Das Deutsche Gesundheitswesen, which was published by the Ministry of Health they explained:

Because a satisfying symptomatic therapy is possible only in a few cases, a reduction of genetically determined morbidity is only available by the means of prophylaxes—that means: timely genetic counselling. A key improvement of the genetically determined morbidity of our population can only be expected if genetically burdened persons arrange their family planning in a way that they avoid the procreation and birth of heavily genetically impaired children. This has to happen voluntarily, in their own interest and in the interest of society (Steinbicker et al. 1977, 179).

The understanding of genetic counselling as a preventive measure was not limited to the GDR; many other socialist countries did the same, as did the Federal Republic of Germany (FRG) (Bochkov 1975, 29; Seemanová 1975, 40; Wendt 1979, 11). Moreover, ‘prophylaxis’—the term used in the GDR instead of ‘prevention’—was a central issue in GDR healthcare. Thereby, Steinbicker et al were following a general development in the East German preventive healthcare system: the shift from structural prevention (Verhältnisprävention), with the intention of changing social conditions, to behavioural prevention—promoting individual behaviour change. The latter emphasised each person’s responsibility for him or herself (Niehoff and Schrader 1991, 51–74).

We may understand this development against the backdrop of growing individualisation in the GDR in the 1970s and 1980s, which the historian Mary Fulbrook described in her sociohistorical study of the period (Fulbrook 2005). Although individualism was still a combative term that Marxist-Leninist philosophers connected to capitalist societies, this development was not a contradiction for a socialist society. In such a society—so the argument went—the individual could evolve in dynamic interaction with the social conditions of life. Hence, the dialectic unity of the individual and society could be realised (Klaus and Buhr 1972, 513–14, 516). The textual preamble to the ‘Law on the Interruption of Pregnancy’ (1972) (Gesetz über die Unterbrechung der Schwangerschaft) serves as an example of this declared unity. It stipulated:

The equal rights of women in education and occupation, marriage and family life require that women can decide for themselves about a pregnancy and its termination. The realisation of this right is inseparably linked to the growing responsibility of the socialist state and all its citizens for the constant improvement of women’s health protection, for the promotion of the family and the love of children (Büro des Ministerrates der Deutschen Demokratischen Republik, ed 1972a, 89).29

This law granted women the right to first-trimester abortions on request regardless of the number of pregnancies they had had. In case of ‘serious medical reasons which […] would significantly affect a woman’s state of health’,30 the law granted the option to terminate the pregnancy beyond the first trimester, if approved by a medical panel (Büro des Ministerrates der Deutschen Demokratischen Republik, ed 1972a, 89). In practice, a positive diagnosis regarding a genetically determined disease within the fetus was considered such a ‘serious medical reason’. The liberalisation of abortion was part of a larger development that placed reproductive decisions in the hands of women and hence provided predictability. This trend went hand in hand with easy access to ‘the pill’, which was dubbed the ‘desired child pill’ (‘Wunschkindpille’). The latter was expected to improve the reconciliation of motherhood and work and was available for all women of reproductive age.31 Preceding this development, in the 1960s, Karl-Heinz Mehlan, professor for social hygiene in Rostock and an activist for Planned Parenthood, had already combined the state’s interest in stable birth rates with the individual promise of happy and healthy families. In this process, he created the ideal of the Wunschkind, the ‘desired child’ (Mehlan 1966, 11). Only a few months after the ‘Law on the Interruption of Pregnancy’ came into effect, Witkowski and Steinbicker took up this issue in the health periodical humanitas and devised the following entitlement: ‘In a society, in which a woman can decide for herself whether to terminate or carry a pregnancy to term, she has the very special right to scientifically based counselling and to the birth of a normal, viable child’ (Witkowski and Steinbicker 1972, 4). An important prerequisite to fulfil these demands was the increasing technical possibilities of prenatal diagnosis.

Talking with the public

Human geneticists frequently complained about insufficient knowledge in the field of human genetics in the public but also among physicians. To remedy this, they held lectures, gave interviews or wrote articles not only in professional journals but also in popular magazines. In general, the ‘popularisation’ of scientific knowledge had high significance in the GDR, as science was highly valued. In addition, I follow the interpretation of the historian Thomas Schmidt-Lux in his study on the secularisation process in the GDR. He pointed out that by (Marxism-Leninism) exaggerating science to scientism it became a ‘scientific ideology’ (wissenschaftliche Weltanschauung) and even a substitute for religion by offering ‘meaningfulness, interpretations of the world, social norms, and directives which claim absolute validity’ (Schmidt-Lux 2008, 66).32 The interview with biologist and cytogeneticist Regine Witkowski in the NBI illustrates how human genetics and genetic counselling were projected as being strictly connected to science.

The NBI was published weekly and attracted a broad audience. It included large-sized photos and a potpourri of topics such as political reports, information on distant countries, everyday-life features, news on cultural events, sports and fashion, serialised novels, DIY tips, health guidance, posters of athletes, riddles and a page for children. In 1974, it had an average circulation of 701 545—thus, it was one of the high-circulation magazines in the GDR and not a niche journal (Löffler 1999, 49; Kleinhardt 2016).33

The interview with Witkowski opens with the decision of the Ninth Party Congress of the Socialist Unity Party of Germany to foster the development of human genetics, and closes with an envisioned joint venture between socialist society and human geneticists—with particular emphasis on the recognition and promotion of individual qualities and talents. These starting and ending points frame the story and provide political legitimisation for the topic. Throughout the article, sometimes more and sometimes less explicitly, Witkowski mitigates and reigns in various fears: first, the fear of the deterioration of the human genome, second, the fear of being stigmatised as inferior because of hereditary dispositions, and third, the unfounded fear of having a child with a genetic disease, despite any scientific evidence. Instead, Witkowski presents genetic counselling as a preventive, predictable, strictly scientific method, based on the exclusion of risks. Moreover, it is portrayed as a voluntary endeavour that has nothing in common with eugenics, and especially not with ‘Hitler’s fascism’. According to Witkowski, genetic counselling will help to avoid severe human suffering, by which she means the birth of a child with a disability (Bergmann 1977, 16).

The dialogue structure highlights Witkowski’s expertise. While her interviewer expresses concerns, Witkowski is able to dispel these by referring to scientific facts, and using neutral, factual language. By contrast, she uses emotive words when referring to the National Socialist past and talking about disability. In doing so, she refers to a medical model of disability that stresses physical and/or mental limitations.34 At this point, it is notable that neither Witkowski nor her interviewer explicitly mention the following: that the way of avoiding this ‘suffering’ would be—in the case of a pregnancy—to have an abortion.

The dialogue structure is not limited to the interview itself, but continues in the communication between the text and two illustrations, which are embedded in the interview, and a single side photo at the other side. The illustrations, a diagram of an amniocentesis and a pedigree, are in a grey box in the middle column of the interview and are accompanied by an explanatory text. The amniocentesis shows a fetus in a uterus while a needle from outside enters. The explanatory text presents it as an examination that provides certainty over the presence of a hereditary disease. The pedigree chart shows a three-generation family with carriers of the recessive metabolic disease phenylketonuria (PKU) and two affected persons. The accompanying text points to the successful treatment of children with PKU in the GDR. It shows male and female carriers who have five children: two carriers, two affected children and one child without the trait. The text states, ‘Pedigree of a family, in which two children are expected to have the hereditary disease phenylketonuria’ (Bergmann 1977, 16).

Again, it is interesting what the explanations do not say: in case of the amniocentesis, the text does not mention the risk of a miscarriage and the possible failure to retrieve and cultivate amnion cells. In case of the pedigree, it does not state that for each child the probability of having the disease is 25%. Thus, in a family with five children it is possible for all or none to have it. Instead, the pedigree functions to turn a probability into a fact. Its unambiguity and omniscience are striking. Each family member is either a carrier, a sick person or a person without the trait of the disease, implying perfect family knowledge35 on the genetic constitution of each of them. There is no family member who we know nothing about. According to the pedigree, it is assumed that all family members live in stable, heterosexual partnerships. Against the backdrop of high divorce rates and the existence of single parent (mostly mothers) and stepfamilies in the GDR the pedigree is striking in its idealised and normative approach.36 In addition, the article factored out any uncertainties.

The written interview is accompanied by a single side photo. The photo clearly shows a young, white family of four sitting on the beach. The woman and the man—both have a child on their lap—appear on equal footing. While this, and their short haircuts, which adhere to the unisex style of the 1970s, can be interpreted as embodying gender equality, it is still the man who plays a musical instrument (harmonica) and thus represents the active part. In the centre of the picture is a baby. All members relate to each other, no one looks at the camera, which conveys intimacy and safety. In addition, they all make a happy and content impression; no one seems ill or has an apparent disability. In the upper corner of the picture is a short text that says, ‘Human genetics contributes to children being born healthy and growing up happily, which is consistent with the goals of our humanistic social order’ (Bergmann 1977, 17). The background of the photo is a blurry grey—creating an effect that strengthens the dialogue between the grey amniocentesis on the left page and the healthy and happy baby on the right, linking genetic counselling and prenatal diagnosis to a bigger narrative of medical and humanistic progress with an individual happy end (Bergmann 1977, 16–17). Thus, the promise is family happiness and safety. It presents a striking contrast to the images Birgit Nemec presents in her article on genetic counselling in the FRG (in this volume): in the latter, fittingly for a market economy, the focus is on a couple’s choice.

To sum up: by factoring out uncertainty and inappropriate emotions, the interview presented genetic counselling and prenatal diagnosis as safe, fact-based and reasonable methods. Moreover, it presented certain emotions—especially fear—as the opposite to rationality, something that disrupts true science. The simplified message of the interview was that the scientific progress of genetic counselling leads to healthy and happy children. Consequently, people with a disability did not really occur in this story.

The talking practices of genetic counselling

Witkowski, who worked at the neurological clinic of the Charité university hospital in East Berlin, was the main author of the principal book on genetic counselling in the GDR (Witkowski and Prokop 1974). Its first edition was published in 1974, the second in 1976, and in 1983, the third, extended edition was published in West Germany. In English, the title reads ‘Hereditary Syndromes and Malformations: A Dictionary for Family Counselling’. Although the matter of counselling is quite prominent in the title, there is no chapter on practical communication. Instead, the book served as a diagnostic manual (Witkowski and Prokop 1974; Witkowski and Prokop 1976; Witkowski and Prokop 1983). The focus on diagnostics was also implemented in the ‘Complex ‘Human Genetic Counselling Service’ Transfer Programme’ of the Ministry of Health in 1977. According to it, the primary task of genetic counselling centres was the detection of genetic findings and their explanation to the counsellees.37 This was a strikingly different approach to that in the USA, where the psychologist Melinda Richter established the first genetic counselling training programme at the Sarah Lawrence women’s college in Westchester (New York), at first against the resistance of medical geneticists. She created an independent job profile for (mostly white and middle class) women that was directed towards medical social workers. In the USA, sociopsychological communication was understood to be central to the counselling process, to the extent that Stern claimed that genetic counselling ‘can be grouped broadly under the rubric of emotional labor’ (Stern 2012, 122).

Although the GDR had a high percentage of women doctors and scientists (Schagen 1996, 328, 331–32), genetic counselling was not typically a woman’s occupation. In addition, communication techniques and emotional management were neither a subject of the ‘Guidelines for the Award of the Professional Title of Specialist Human Geneticist’ (the qualification for scientists) nor of the education programme for medical specialists for human genetics (the qualification for physicians). Even though the latter stated that ‘particular emphasis should be placed on the teaching of ethical and psychological principles’, it did not specify what those entailed.38 Neither did psychological topics appear in my studies of congress programmes and reports of the working group ‘genetic counselling’ of the Society of Human Genetics of the GDR.39 This may be for several reasons: first, communication techniques were an important focus for psychologists, but they were not involved in the development of genetic counselling (in distinct contrast to the USA). Second, genetic counselling was regarded as a medical activity, and since doctor-patient communication was a responsibility of all doctors, it was probably considered unnecessary to train genetic counsellors in this field.40 Third, in the USA, ‘genetic counsellor’ was a new professional identity and thus needed legitimacy, such as special abilities that other professions could not provide.41 Physicians and biologists in the GDR, in contrast, already had their legitimacy.

While in the USA genetic counselling was formed by the client-centred approach of psychotherapist Carl Rogers (Stern 2012, 117, 126–28, 138–40), in the GDR, it was shaped by the educational, caring, therapeutic and scientific impetus of medical doctors and scientists. Physicians were used to treating patients, but they were not trained counsellors. Consequently, they regarded counsellees not as ‘clients’ (a term often used in the USA) but as persons who needed guidance and who were looking for medical advice. Furthermore, the focus of genetic counselling in the GDR was on the diagnosis and interpretation of genetic findings, rather than on the process of reflecting on how to come to a decision. Moreover, philosophical and ethical aspects mattered. The Ministry of Health instructed the scientists of society (‘Gesellschaftswissenschaftler’)42 Hans-Martin Dietl, Heinz Gahse and Hans-Georg Kranhold from the previously mentioned Institute of Marxism-Leninism of the Medical Academy in Magdeburg to explore the philosophical foundations of human genetic measures in socialist society with special consideration of ethical aspects.43 Subsequently, they published several articles and a book on this topic and talked about it at several conferences.44 They emphasised the moral commitment of the counsellees and counsellors, not only to their conscience, but also to socialist society. In keeping with this, both society and counsellees expected and needed healthy and happy offspring. Hence, the scientists concluded that it was not sufficient for counsellors to solely inform the counsellees based on facts. Even though in the end the counsellees decide for themselves, counsellors should provide active support and instructions for the decision process. Via references to other scientists—including some in the Soviet Union and West Germany—and on the basis of their own empirical research, the scientists argued that this view was not only their individual opinion (Dietl, Gahse, and Kranhold 1977, 99–113).45 Indeed, in 1973, Gahse and Kranhold had interviewed physicians, medical students, pedagogues, skilled workers, foremen,46 and other staff from a local manufacturing company in Magdeburg, as well as staff in the food industry and in socialist commerce. Other than those professions, Gahse and Kranhold did not include any other categories. In total they surveyed 346 people, and reported that the majority of them expected not only a presentation of the facts and their consequences, but ‘real advice’, meaning a recommendation for the best possible conduct. This result was not very surprising as the question had been suggestive: Gahse and Kranhold had asked what counsellors should recommend, ‘if in a specific case there is a high probability that severely hereditarily damaged offspring will result from a union (marriage)?’47 Thus, they constructed an alarming (‘high probability’ and ‘severely damaged’) and unambiguous situation. Nine persons of the 346 answered that they did not want any interference (Gahse and Kranhold 1975, 267–72).

In keeping with the message from this survey, most physicians and biologists who practised genetic counselling considered and issued recommendations for prenatal diagnosis, birth control, abortion or adoption as part of their job. The terms ‘to recommend’ or ‘to dissuade’ are pervasive in the literature on genetic counselling published in the GDR, as well as in the archive files.48 The genetic counselling centre in Jena, for example, developed a special form for the documentation of genetic counselling, which listed eight possible recommendations for a present pregnancy: (1) No objections to carrying the pregnancy; (2) Carrying with reasonable risk; (3) Prenatal diagnosis (absolute indication); (4) Prenatal diagnosis (relative indication); (5) Abortion; (6) Preventive or intrauterine therapy; (7) There is no present gravidity; (8) Others.49 Analytical studies conducted at the time concluded that in most cases, the counsellors did not dissuade a couple from having their own children (Seidel 1984, 35–38, Janitzky 1990, 48). Moreover, counsellors and medical philosophers/ethicists stressed that even when a counsellee did not follow the recommendation, this had to be accepted (Bach 1974, 175; Körner and Körner 1981, 85).

In fact, there were cases in which counsellees broke off the counselling process or did not follow the recommendations—they resisted elements of the counselling process. Evelyn Janitzky, who evaluated just over a thousand consultations in Jena between 1980 and 1985, reported that in 67 cases the counsellees (and in 5 cases, the relatives of the counsellees) did not cooperate—so that it was impossible for the doctor in the encounter to give a recommendation. Furthermore, she reported that two counsellees refused a recommended abortion after prenatal diagnostic test, and another woman decided to have an abortion after taking medication during pregnancy, even though the counsellor had not recommended it (Janitzky 1990, 47, 51, 69). Nevertheless, most counsellees accepted the recommendations given by the doctors counselling them. This is not very surprising as in most cases the recommendation might have met their needs. Since counsellors mostly did not dissuade women from having their own children, most of the counsellees received confirmation that everything was fine. However, Janitzky’s study also showed that in individual cases, counsellees took the risk of having a child with a disability or, on the contrary, did not trust the recommendation that they did not have to worry.

Janitzky’s study also showed that in order for counselling to be successful, another factor was important: the relatives of counsellees. As detailed genealogical exploration (the drawing of family pedigrees) was part of genetic counselling, this group could include the whole extended family. In those cases, communication did not only take place between the counsellor and the counsellee, but also involved other family members, such as siblings, uncles and aunts, even if they were not present for the encounter. In order to create a complete pedigree and come to a correct diagnosis, counsellors needed family support and participation. This could cause some problems when not all members of a family wanted to undergo medical examinations (Braun, Voigt, and Göhler 1977, 1436–40). Nevertheless, the director of the genetic counselling centre in Halle in the 1980s, Hermann Metzke, claimed that only few persons rejected the family examination. Together with specialist for medical law Hans Hinderer, he identified a possible conflict of duties: that of confidentiality towards the counsellee and that of informing a possible transmitter of a disease. According to them, the latter duty would exist in the case of a severe genetic disease, which would have a substantial impact on the person concerned. In such a case, they did not see a problem as long as the information stayed in the extended family, that is, the ‘community based on kinship’ (Metzke and Hinderer 1985, 42). In other words, they prioritised informing a possible transmitter over the confidentiality of the counsellee. This is remarkable in that the hospital regulations from 1979 explicitly required a patient’s consent for a discussion with relatives (Mück 1982, 141). The deviation from this rule shows that Metzke and Hinderer took it for granted that a person concerned would want to know about their risk.

To sum up: those delivering genetic counselling in the GDR had to deal with a contradictory situation. On the one hand, genetic counselling should be strictly voluntary (parents and patients should decide whether to undergo prenatal diagnostics and/or an abortion); on the other hand, it had a clear target (the widespread understanding that the birth of a child with a disability should be avoided). The ideal counsellor would lead the counsellee to make the right, rational decision—but the ability of the counsellor to consciously lead this process was assumed, not taught or reflected in training programmes. The ideal counsellee, in turn, was cooperative, eager for knowledge and made rational decisions. Hence, how were they to arrive at their final judgement?

Risk and uncertainty

The counsellor’s recommendation to prospective parents was based on a calculation of the risk of possible occurrence of a disease or disability, and its ‘disease value’. According to Witkowski a risk of 1% was considered low, and a risk of more than 10%, high. The ‘disease value’ was a number designed to reflect the severity of a disease and its lack of treatability (Witkowski and Prokop 1974). Various methods were used: if the disease had monogenic inheritance (a disease inherited according to Mendel’s rules), then statistical probabilities could be derived. In more complex, polygenic hereditary modes, however, empirical risk figures had to be used. These were based on the largest possible non-selective test series of the relatives of affected persons.

However, all these methods presented difficulties in themselves, because these were complex biological processes that could not easily be translated into numbers. Phenomena such as reduced penetrance, variable expressivity or heterogeneity could lead to considerable deviations from statistically expected values (Witkowski and Prokop 1974, 14–33). Empirical risk figures were only an approximate guide, as the basic series of studies covered both high-risk and low-risk families. It could usually not be determined unambiguously to which of the two groups the counsellee belonged (Fuhrmann and Vogel 1968, 65–69). That means that even in the case of a clear diagnosis, a precise prediction was not always possible.

According to historian Theodore M Porter, American genetic counselling pioneer Sheldon Reed and Swedish human geneticist Jan Arvid Böök ‘introduced the term ‘empirical risk’’ in 1950 as a reframing of the older notion of ‘empirical hereditary diagnosis’ that meant ‘a statistical prediction based on measurable or diagnosable traits’ (Porter 2018, 283, 345).50 By the 1960s, the term ‘risk’ had replaced not only the latter but also other older terms such as ‘manifestation probability’ in human genetics (Cottebrune 2015, 202–5). In the GDR, the term ‘risk’ in the context of genetic counselling was first mentioned in 1972 in the previously mentioned article on genetic counselling in the Soviet Union by Witkowski and Steinbicker (Witkowski and Steinbicker 1972, 4). Even though the words used to express risk changed, the principle did not: ultimately, the creation of risk figures was a matter of establishing probabilities. What changed was that probabilities were made more precise through new technical methods. However, additional laboratory diagnostics, the goal of which were to carry out testing more safely, could again produce uncertainty or even new risks (an amniocentesis could hurt a fetus or even cause a miscarriage). Even to get proper amniotic cells for an examination could be problematic: the sample gained from the amniocentesis might be too small; the amniotic cells might not grow; or the incubator might fail. Moreover, the enzyme activity of the amniotic cell in question might be in a threshold range or the interpretation of a karyogram might be ambiguous (Weise, Quent, and Hemke 1978, 769–78; Weise and Gabriel 1983, 2034–38). Consequently, the risks with respect to the probability of having a child with a disability had to be weighed against the risks and uncertainties of an amniocentesis.

In addition, another modification took place. The assessment of what was considered a ‘high’ or ‘low’ risk could change. To demonstrate this, I compare a passage of text on the inheritance of schizophrenia in a 1955 article by the psychiatrist Dietfried Müller-Hegemann, and a chapter on schizophrenia in a textbook by Witkowski and Prokop 1974. Müller-Hegemann wrote his contribution following a consultation with the Ministry of Health.51 He, like Witkowski and Prokop, calculated the same probability (16.4%) for children with a schizophrenic parent to develop schizophrenia. While Müller-Hegemann saw no reason ‘to kill germinating life, about 84% of which would manifest as healthy’ (Müller-Hegemann 1977, 249), Witkowski and Prokop explained that they would dissuade a person from having their own biological children if one partner suffered from schizophrenia (Witkowski and Prokop 1974, 648). Thus, 19 years apart, the same risk could be evaluated in different ways. Considering the historical background, these different interpretations are not surprising. Müller-Hegemann, still reacting to the horrors of the National Socialist sterilisation programme, and also sympathising with Lysenko’s ideas, emphasised the impact of environmental factors for the development of mental diseases. Witkowski and Prokop, by contrast, stressed the meaning of genetics for medicine over an impressive 1071 pages. So how were the estimated probabilities rated?

As already mentioned, Witkowski and Prokop considered a risk of 1% to be low, and that of more than 10% to be high. As well as risk, the so-called ‘disease value’ was employed to help the counsellor to make a recommendation. It should be borne in mind that doctors were consulted in difficult situations and in the case of physical complications. They might even have experienced affected children dying prematurely. These experiences confronted them with the difficult aspects of a disability or chronic illness. It can be assumed that these experiences also shaped the disease value and thereby the recommendation. The disease value was based on the severity of the disease and rated the extent to which it could be treated. For example, in the case of haemophilia A—‘a suffering that has lost much of its terror’ (Witkowski and Prokop 1974, 310)—Witkowski and Prokop would not dissuade a person from planning to have a child. In case of Duchenne muscular dystrophy, a disease characterised by progressive muscle deterioration and without treatment options, they would do so (Witkowski and Prokop 1974, 512; Doetz 2021). In other words, feelings of helplessness as well as feelings of success were decisive factors in the way that these professionals were instructed to evaluate a disease, a disability or a variation.

Counsellors tried to modify the risk via the disease value in order to come to a recommendation, but how did counsellees handle this? Moreover, did they have the same perception of risk as the counsellors? Few sources provide insights; however, in her aforementioned thesis, Janitzky conducted retroactive examinations of 90 counsellees.52 Her question was whether the counsellees had understood what the counsellors had recommended, and whether they had implemented those recommendations. With regard to risk assessment, Janitzky found that in 30 cases, the risk formerly given by the counsellors and the risks now given by the counsellees coincided exactly. However, in 16 cases, there was only relative consistency, in 10 cases, the counsellees did not answer the question, and in 34 cases, the value given had been clearly wrong. In general, there had been a tendency to estimate the risk to be rather too high than too low (Janitzky 1990, 63–67). This leads to the question as to what extent the risk assessment itself evoked, rather than reduced, new fears. Janitzky pointed out that the risk assessment was influenced by the way counsellees experienced the proceeding of a disease: in the case of a favourable course, a high risk could be underestimated; in the case of deterioration, a low risk could be overestimated (Janitzky 1990, 92).

Thus, counsellees may have had a different risk perception to genetic counsellors. That means that, besides the different interpretations of high and low risk, and the modifications of risks via the disease value, there was also the possibility that risk perception changed a risk figure itself. Consequently, risk figures were not only relative but could also become fluid. They were not only tools for a rational communication; counsellees could also use them to express fears and hope. One may interpret this as an idiosyncratic appropriation of the risk concept. But it also means that the interpretations of the genetic counsellors were not absolute.

Coming back to the communicative aspects of genetic counselling, I consider it important to state that the risk calculation was more than a tool for decision-making. Rather, I would describe it as a communication builder: first, counsellors had to collect information in order to arrive at a risk calculation. Then, they had to interpret the result of this calculation to the counsellee. Consequently, the risk evaluation structured the counsellor-counsellee conversation.