The unleashing of genetic terminology: how genetic counselling mobilizes for risk management

Abstract

Nowadays every encounter with a health expert holds the danger of contracting risks. Especially women, when a family member develops breast cancer or when diagnosed as pregnant, leave their medical appointments saddled with doctor-attested risks, alleged prognoses, which then hang over their lives like a Damoclean sword. The epidemic beweilderment caused by the confusion between the attribution of a risk profile and a diagnosis has so far evaded the discussion it merits. Taking the example of prenatal genetic counselling, this paper argues that the unleashing of genetic terminology into the everyday world provokes this fundamental misunderstanding of risks: Genes change people's self-perceptions in such a way that they are ready to view statistical constructs as meaningful statements about themselves. By foisting causative agents into the client's body and by redefining her pregnancy as the execution of a genetic program, the counsellor prepares her to regard probabilistic calculations as threats lurking within her body. Based on the results of an empirical study of genetic counselling in Germany, this paper shows how professional consultations on genes and risks mobilize pregnant women to become risk managers of their own affairs.

In statistical affairs … the first care before all else is to lose sight of the man taken in isolation in order to consider him only as a fraction of the species. It is necessary to strip him of his individuality to arrive at the elimination of all accidental effects that individuality can introduce into the question.

(Academie des Sciences, Paris 1835).1

Fear of risk—the fear of a phantom

My mother was able to experience pregnancy unencumbered by risk. No doctor confirmed this for her; rather, in 1970 there were as yet no risks in the physician's practice. Into the 20th century, the term ‘risk’ existed in the German language only in the contexts of business and insurance. In the colloquial language, the word gained acceptance as a synonym for ‘danger’ or ‘daring’—as far back as 1934, traffic was said to involve risks.2 In the 1960s, when the idea of preventive medicine took off, scientists promoted filter cigarettes as being ‘risk-free’ tobacco products.3 Thus, when my mother was pregnant with me, she was definitely surrounded by risks; what was unimaginable to her, however, was the idea that she herself should carry a personal risk.

Today, in contrast, sick people, pregnant women and perfectly healthy people all live in the shadow of their personal risk. Everywhere—while reading the science pages in my daily newspaper, taking in health tips at my local health food store or during a routine visit to the gynaecologist—I run the risk of being saddled with a risk. In the doctor's office, the attribution of risks is particularly powerful. In contrast to the hazards of eating meat contaminated with hormones and antibiotics or smoking packets of cigarettes, ‘corporeal risks’ attested by a physician indicate not only potential disasters in the future, but also bodily ‘disorder in the present’ (Kavanagh & Broom, 1998, p. 442). Biomedicine and probability theory open up a ‘new divinatory space’ (Lock, 1998, p. 9) and create new anxieties galore. My neighbour, whose mother and aunt both had been diagnosed with breast cancer, has lived for years with the fear of her ‘elevated risk’; she awaits each check-up with anxiety and pores over all the advice pamphlets on ‘Breast fitness—How to reduce your risk of breast cancer’. Almost all of my women friends became risk bearers from their first appointment with an obstetrician after a positive pregnancy test. In the shadow of risk, expecting a child means anticipating everything that could go wrong and managing the corresponding probabilities (Rothman, 1987; Samerski, 2002). I can still remember quite clearly finding a bewildered friend at my door whose doctor had just demanded that she choose between two risks: that of having a disabled child and that taking a test that might cause a miscarriage.

What is this ‘risk’ that puts organic food proponents off their sausage, turns my neighbour's breasts into a ticking time bomb and makes my pregnant friend expect a bundle not of joy but of pain? How can it be that statistical figures indicating the probability of certain events for entire population cohorts conjure up the cretin in my friend's belly and the slow death of my neighbour?

In order to address the question of how it is possible that people allow statistical calculations to sap their courage to face life, I would like to examine the example of genetic counselling. Genetic counselling vividly illustrates the havoc that scientific concepts can wreak when they invade everyday life. In a one to two hours session, the counsellor sits opposite of the pregnant woman (and, when available, the presumed father) to begin with a 20-minute crash course on genes, on the probabilities of birth defects, on their ominous supposed presages about the newborn's future, about risk and its calculation, and on a modern woman's obligation to feel responsible for decision-making. The aim of this lesson is not only to enlighten the mother-to-be, but to prepare her for a decision fraught with consequences: she is asked to decide whether, in the face of the various predicted risks, she wants to undergo prenatal testing or not. Therefore, facing the counsellor's genetic lectures the client inevitably asks herself: What does all this say about me? What does ‘meiosis’, ‘recessive mutation’ and ‘maternal age risk’ mean to me (see also Lippman-Hand & Fraser, 1979a; Rapp, 1999)? As follow-up interviews have revealed, clients struggle hard trying to make sense out of genetic models and statistical figures that in principle are sense-less (Lippman-Hand & Fraser, 1979b; Rapp, 1999; van Zuuren et al., 1997). No matter how they finally deal with the abstract concepts and numbers, the decision they are urged to make has real consequences which women experience physically. If the test turns out to be positive, terminating the pregnancy is the only measure the counsellor can offer. As Barbara Katz Rothman has put it trenchantly, the woman ‘enters into a rational seeking of information and choices and finds herself trapped in a nightmare’ (Rothman, 1987, p. 181). This clash between the expert's instructions and the woman's everyday understanding has been analysed as either a problem of medical jargon and expert–client communication (Browner et al., 2003; Chapple et al., 1997; Rapp, 1999) or the disappointment of the client's hope for certainty by the uncertainty inherent in genetic predictions (van Zuuren et al., 1997). But the fundamental reason for this bewilderment, namely the misleading presumption that a statistical risk estimates the degree of threat to a patient, has yet evaded the discussion it merits.

In this article I would like to highlight one of the greatest dangers of the unleashing of genetic terminology: ‘gene talk’ (Fox Keller, 2000, p. 138) confuses statistical constructs with meaningful statements about a person. The belief in genes creates an imaginary connection between probability calculations on the one hand and bodily, sensory existence on the other. If my neighbour believes that she carries a genetic command for an early death sentence and my friend believes that a genetic programme is running in her uterus, then they are inclined to take abstract risk figures personally. To clarify the symbolic efficacy of the ‘gene’, I first have to briefly address the peculiar status of this four-letter word as it is used in everyday speech. On the one hand, the word ‘gene’ begs to be imbued with meaning; on the other, however, it refers to nothing outside the laboratory. This contradiction is the reason why it can function as a bridge between statistics and everyday reality. Second, I would like to point out that genetic counselling is not a medical consultation in the traditional sense. Risk thinking stands in the way of medical treatment; physicians cannot act on the basis of the probabilities of biostatistics without losing sight of their patient. Often, the pregnant woman is cheerful and full of energy until her doctor or counsellor performs his educational duty and confronts her with all the possible statistical risks. This information leaves the pregnant woman not as a patient diagnosed with a problem or abnormality, but as a faceless member of a risk group.

Genetics claims to bridge the gap between concrete persons and abstract risk figures. I would like to illuminate how this occurs by describing the counselling session with Ms G., who is five months pregnant and is supposed to decide whether to undergo genetic testing on the basis of various risk figures. I have met Ms G. in one of the 30 genetic counselling sessions which I observed and tape recorded for a qualitative study on the demands of prenatal decision-making.4 All quotations below are my translations from these German language transcripts.

‘Gene’—a plastic word?

The linguist Uwe Pörksen uses the terms ‘plastic words’ to refer to scientific terms that have spread to common parlance. He calls them ‘plastic words’ because technical terms that migrate from their original context lose their power of reference and acquire a powerful halo of connotations (Pörksen, 1995).

When an information theorist speaks about information with his colleague from the cybernetics department, both of them know that the technical term refers to a precisely defined quantitative measure for the reduction of options. ‘Information’ here has a precise technical denotation. But at lunch in the cafeteria, when the cyberneticist eats with a geneticist, the information-theoretical word ‘information’ already mutates to a popular scientific term. The geneticist blithely borrows ideas and terms from cybernetics, and speculates with the help of his colleague on the informational content of DNA. The geneticist has only a vague grasp of information theory; for him, ‘information’ is the objectivizable context of a text or code, and this is how he imagines the ‘genetic information’ of DNA. ‘Information’ here is no longer quantifiable and precisely defined, and the plausibility of ‘genetic information’ stems in part from its connotations in everyday language. The same geneticist is invited that evening to a public hearing with citizens and politicians, in the hope of acquiring additional research funding. In order to make matters easier for his audience, he speaks of ‘genetic information’ stored in the genes in the same way that messages can be stored on an audiotape. The educated laypeople are impressed. Since they always try to keep informed, it is immediately clear to them that ‘genetic information’ is a positive commodity, which cannot simply be allowed to lie fallow. He speaks of ‘information’ about life, and of what geneticists are learning from progress in genetic technology. Since the word ‘information’ so self-evidently connotes at once a scientific and a general significance, nobody asks any longer what it might mean.5

The key term of genetics, the word ‘gene’, cannot be counted so simply among Pörksen's plastic words. It is doubtless one of the most powerful migrants from the word factory of science into everyday language. Even geneticists among themselves, however, cannot use ‘gene’ as a technical term. The geneticist Raphael Falk pointed out in 1984 that the findings of molecular biological research in the 1970s had already debunked the notion that one could pinpoint genes as units of heredity and development. According to Falk, molecular biology turned the gene back into what it had been from the outset: a useful working hypothesis, a conceptual crutch. ‘With each new development in molecular genetics, it became obvious that the gene was nothing more than an intellectual device helpful in the organization of data’ (Falk, 1984, p. 196). What the word used in a lab conversation refers to depends solely on who uses it in what context: whether the speaker is a population geneticist calculating the frequency of alleles in the population, a molecular biologist conducting a biochemical analysis of DNA and referring to certain base sequences as ‘genes’, a computational molecular biologist projecting ‘signal-to-noise’ ratios, or, finally, a doctor tracing the hereditary patterns of diseases and basing them on Mendelian hereditary characteristics. ‘Gene’ does not mean the same things in the cases cited here. The philosopher of science Philip Kitcher thus suggests the following definition of a gene: ‘A gene is anything a competent biologist chooses to call a gene’ (Kitcher, 1992, p. 131).

Thus in the laboratory, ‘gene’ refers to something arbitrary. It has no algorithmic or empirical referents—‘gene’ stands neither for a mathematical function, such as the ‘information’ in cybernetics, nor for an observable phenomenon, such as the ‘chromosome’ in biology. Outside the laboratory, in contrast, ‘gene’ appears as the building block of life and connotes boundless possibility. And it is precisely this paradox, the absent power of reference on the one hand and the enormous connotative charge on the other that makes all this talk of ‘genes’ so effective. The word ‘gene’ acts as the Trojan horse with which risk thinking is smuggled into everyday life.

What is a ‘risk’?

‘You have a heightened risk.’ Such a sentence sounds frightening, particularly coming from the mouth of a doctor who threatens you with a serious illness. But such a sentence is very much liable to misunderstanding. In medical statistics, risks are statistical probabilities of occurrence; thus they provide information on the frequency of events in statistical wholes. In order to make their patients compatible with statistics, the physician must ignore everything that previously constituted the foundation of the healing arts: he must consciously leave aside the concrete, particular and unique in his patients and regard them as a homogeneous component of a statistical class.6 The ‘personal’ or ‘individual risk’ of which he tries to convince the informed patient is by definition non-existent.

Nevertheless, nowadays probability curves no longer serve merely to help health insurance companies calculate their cost unit rates; they are also increasingly being used as the basis for medical patient management. Whether the problem is the increased urge among older men to urinate, the uncertainties of pregnancy or an uncle's early death from heart disease—anything that a few years ago would have been considered a misfortune, a stroke of fate or simply part of life is now a ‘risk factor’ that falls under the purview of health managers. This creates a whole new class of service dependants, since the fear of risk must be lessened or managed somehow. The fear of risk produces service consumers whose needs can never be met: all a geneticist can offer is to perpetuate the genetic fortune-telling by means of genetic testing, and to calculate new risks. In order to remove the risk, ultimately all that remains is the ‘-ectomy’: whether it involves the removal of a breast or a foetus.

The genetic counselling of Ms G.

Genetic counselling exists to sell genetic and statistical concepts, most frequently to women. It is an authority dedicated to the targeted popularization of scientific terminology. A geneticist explains statistical data and genetic models to a woman, in most cases a pregnant woman, compiling a risk profile for the future child and demanding of the expectant mother that she make a decision for or against this risk profile. This new form of optionalizing pregnancy is known as ‘autonomous decision-making’.7

I selected the story of Ms G. out of the 30 genetic counselling sessions at which I was present as an observer (see note 4). Ms G. is a baker in a small town in southern Germany. Her husband, a construction worker, could not accompany her because he did not get leave. She appears at the counselling session dressed in jeans and a sweater, and her little belly is already showing. Ms G. has heard that one can undergo a test for cystic fibrosis. She is in the fifth month of pregnancy and her husband is worried because his nephew died of this disease as a small child. Ms G. herself is cheerful and is certain that the test results will be negative, as no inherited diseases exist in her family. Nevertheless, if it is possible to take such a test, then she would like to do so—for safety's sake. The genetic counsellor begins the session by compiling a risk profile for the expected child. First he asks Ms G. about her husband's deceased nephew. Ms G. reports that the child died at age 10 of cystic fibrosis. Unfortunately, her husband is no longer in contact with his sister, so she was unable to bring any clinical records with her. The counsellor takes note of this regrettable circumstance and switches to the subject of Ms G.'s pregnancy and then asks about the health of her relatives. He excuses his indiscretion with the comment that ‘We are trying to determine whether there might be any risk of anything for the child.’

Having discovered no additional genetic abnormalities in Ms G.'s family, the counsellor begins to lay the foundations for Ms G.'s decision. To this end, he builds on the baker's general popular scientific knowledge and confronts her with hopelessly antiquated textbook knowledge. The counsellor presumes that Ms G. already knows what he means when he speaks of ‘genes’. To help her along, he equates ‘genes’ with ‘hereditary factors’,8 a term from the first half of the last century. In order to locate these alleged genes and to make their existence plausible, he presents the pregnant women with black and white pictures with little, shapeless worms on them and says:9

Table

Counsellor:

What you see here are chromosomes.Chromosomes are not themselves genes but rather serve as the bearers of or the packaging surrounding genes. And we humans have approximately 70,000 genes, which are so small that they aren't even visible under a microscope. And such bands, aswe call them, one of these striped patterns, contains hundreds of genes; these are the dimensionswe're talking about.

According to the counsellor, ‘genes’ are thus particles that are hidden in chromosomes. The figure of 70,000 suggests that what we have here are discrete, countable units. Through the use of the adjective ‘little’, as well, he attributes objectness and spatial expansion to genes. And with this quality, he also explains the fact that Ms G. is unable to recognize any genes in the pictures with the worm-like figures on them: her naked eye is unsuited to the size dimensions of genetics. Through the pictures of chromosomes, however, the geneticist gives that which is invisible a concrete location: he can point to the worms with his finger and claim that that is where the genes are.

The geneticist has now persuaded Ms G. that there is something inside her that she cannot herself perceive and that this thing is called a ‘gene’. In the next section, he explains to Ms G. that these genes are active, that they do something, and that her fate depends on this genetic activity.

Table

Counsellor:	A large chromosome can contain a thousand or more genes … OK? Good. What we cannot see by looking at the chromosomes is where changes take place in the individual genes.
Ms G:	Hmm.
Counsellor:	OK? And yet such changes can cause hereditary diseases, right?

Thus genes do something; they cause diseases. The notion that the fate of a person is determined by these genes, indeed is pre-programmed by them, is reinforced by the counsellor when he introduces Ms G. to the term ‘genetic information’:

Table

Counsellor:	If I should extract a cell from someone's body, it would give me representative genetic information about the whole person.
Ms G:	(amazed) Hmm.

By now Ms G. seems flabbergasted. From the look in her face I cannot tell if she was impressed by the fact that these genes inside her allegedly contain representative information about her entire person, or if she was rather defeated by the geneticists mumbo-jumbo. I have long puzzled over the question of why the counsellor is telling her all this. Ms G. has come to have a test done and is informed about 70,000 pieces of hereditary information on some worm-like figures. She is looking after her own child, whom she is expecting, and the counsellor explains to her that he could extract representative genetic information from her. Ms G. is now neither better informed about genetics, nor has she learned anything about her unborn child. However, the counsellor has given her a lesson and prepared the ground for a misunderstanding with serious consequences. The idea that in tiny little genes inside the body information about diseases and health are stored turns Ms G. into a conglomeration of units of information, thereby making her compatible with the probability curves of genetics. Faith in genes creates willingness to engage in risk-thinking.

Statistical fortune-telling

After the counsellor has put it to Ms G. that she should regard herself and the child she is expecting as the embodiment of genetic programming, he then explains what kinds of damage programming errors can wreak. He enumerates all the things that can be wrong with a newborn and ascribes these ‘congenital defects’ to Ms G. as her ‘basic risk’. He then presents her with a steep probability curve and locates Ms G. at a point just before the unnerving rise. At 33 years old, he explains, her risk of having a child with Downs Syndrome is not as high as it is among older women.

After 45 minutes, he finally gets to the subject of cystic fibrosis. To calculate the risk that Ms G.'s unborn child might have, he sketches out the possible combinations of chromosomes that can occur during conception. The chance distribution of these ‘chromosome lotteries’, as he calls them, he then calculates with the ‘gene frequency’ in the German population. This probability calculation results in a figure of 0.5%. Ms G. is now expected to deal with this result.

Table

Counsellor:

So you've got a 0.5% risk for cystic fibrosis. I mean, it's true … In individual cases, when it's you who is affected, then it's 100% for you. But it is still slight.

As the counsellor implies, these numbers say nothing either about the future of the child or about Ms G. herself. A ‘personal risk’ is an oxymoron; a contradiction in terms. By definition, statistical probabilities refer to the occurrence of events in statistical populations. If 200 women with Ms G.'s risk profile were to give birth to a child, then theoretically speaking, one of them would be affected. As to whether the actual child that Ms G. is carrying will be among the 99.5% or the 0.5%—the truly decisive question for Ms G.—these numbers provide no information.

The 0.5% figure that Ms G. should take personally the counsellor describes as an ‘elevated risk’, and he offers Ms G. the option of undergoing a genetic test for cystic fibrosis. However, according to the counsellor, taking the test would imply other risks: examining the unborn child carries with it the risk of inducing a miscarriage. Furthermore, the test results do not provide certainty as to the health of the child, but rather result in a new risk profile. Even a positive test result is not yet a diagnosis of an illness. Based on the test results, one cannot foresee what symptoms of cystic fibrosis the child might later develop.10

The call for risk management

Although he is a trained physician,11 the geneticist cannot issue diagnoses or recommend any therapies. His ‘patient’ has not yet been born. And the only possible treatment method he could recommend would be to terminate the pregnancy. His task is statistical fortune-telling. Thus the medical expert can merely present options and urge the woman to make her own responsible decision. ‘I can only say what can be done, not what should be done,’ he states clearly.

If Ms G. believes the geneticist, she then finds herself in a situation in which she has to make a calculated decision about the test and thereby, inevitably, also about her pregnancy—something which she never wanted. Ms G., maybe naively, had hoped to gain security by testing and to calm down her worried husband, as she said at the beginning of the session. She never wanted to question the coming of her child. But by placing the test and the continuation of the pregnancy without testing alongside one another as both representing options involving certain risks, the counsellor turns the pregnancy into a matter requiring a decision. He states plainly:

Table

Counsellor:

Either you do it or you don't; at some point the decision has to be made.

But how should Ms G. make a decision on the basis of various risk figures? About herself and her unborn child she knows as little as before—with the difference that the calculations of risk have changed her state of happy expectation into one of foreboding.

The counsellor now suggests to her that she become a decision maker in her own case; thus she should look at her situation from the perspective of a manager or an actuary. He challenges her to arrive at a decision by balancing the statistically calculated pros and cons. In another session, the counsellor explicitly tells his clients to weigh the risks he has imparted to them, to become risk managers on behalf of their coming child:

Table

Counsellor:	I wanted to make it clear just now that it is always the job of the parents to weigh them. These two risks.
Husband:	Hmm.
Counsellor:	You are in no way obliged … to undergo this test. Because it's … the parents who decide, the mother ….
Husband:	Hmm.
Counsellor:	… in particular.

Such a weighing of risks, or a ‘cost–benefit analysis’, derives from the world of profit, of the economy, and is useful when it comes to money, quantities. For a manufacturer who produces hundreds of light bulbs a day, such a cost–benefit analysis can help him to arrive at low-cost solutions. Ms G. cannot find such a solution. She is not concerned with ‘more’ or ‘less’; she is not concerned with quantities. What she is concerned with is the child she is expecting.

How all this talk about genes prepares the ground for enslavement to risk

The geneticist specializes in what could happen, and he expresses these possibilities in statistical terms. He can say nothing about what will happen to Ms G. and her child. But there is a difference between what he can actually say and what he has rubbed under Ms G.'s skin. He has convinced Ms G. that there are genes inside us and that these genes direct our fate. Thereby he has created the precondition for Ms G. to regard the probability figures as a measure of her own, personal risk. It now seems as if the risk calculations reflect Ms G.'s physical and mental constitution. Faith in genes is the cement between the abstract probability figures and the concrete person. ‘Genes’ profess to provide answers to questions that probability calculations necessarily have to leave open: who will be affected, and how? Genes, it is alleged, are what causes diseases. The ‘risk’ thus appears as the measure of pre-existing errors, of the threat within one's own body. Statistical calculations take on the aura not of having been produced by a computer but of corresponding to biological processes. By projecting genes into the invisible depths of the biological microcosm, the risk calculations acquire a fictitious but effective anchorage within one's own body.

Genetic counselling can be regarded as a mirror of a society that believes it can seize hold of the future. If the subject at issue is the back-for-the-back office chair, the grandmother with the lump in her breast, the vice of enjoying a glass of wine, the effects of divorce on the immune system or the truant child—the present atrophies into a variable in a risk calculation. Through the linking, via probability theory, of what is with what might be, the eye becomes fixated on statistical possibilities in the future. A host of new educators has made it their task to drum this rigid forward-looking gaze into the heads of their fellow citizens. This is marketed as ‘autonomous decision-making’: allowing oneself to be made insecure and mobilized today through the enumeration of all the things that might happen tomorrow. ‘Counselling’ is what this organized conversion to risk-enslavement is called. Genetic counselling is simply a particularly glaring example of such enlightenment rituals that instil fears for the future into those who are counselled and thereby call upon them to become risk managers in their own affairs.

Notes

1. Quoted in Hacking (1990, p. 81).

2. See the entry for ‘Risiko’ in the Deutsche Fremdwörterbuch, Berlin 1971.

3. Ibid.

4. For this study I attended 30 genetic counselling sessions as a participant observer in three different counselling centres in Germany in 1997, all in accord with accepted human subject research protocols. During the sessions, I tape recorded the conversations and made notes about gestures and facial expressions. The transcripts, from which I removed personal data, were made according to the transcription rules for conversation analysis (GAT, see Selting, 1998). I analysed the transcripts by following the qualitative approach of content analysis. For full detail see Samerski (2002).

5. As far back as 1935, Ludwik Fleck described the ‘genesis and development of a scientific fact’ (Fleck, 1979) as a social process. What began as a scientific idea gradually turns into thought pressure within a working group or academic field. The textbook assembles, through selection and simplification, a complex of clear scientific facts, which then, outside the scientific context, become popular-scientific, universally applicable and experienceable things. Fleck referred to how important popular science is for scientists themselves, for whom it serves as a source of both ideas and faith in the importance of their work.

6. For many doctors in the first half of the 19th century, it was clear that statistics could contribute nothing to the healing art of medicine, in which the individual case was central. They argued: ‘… in applied medicine we are always concerned with the individual’. And: ‘Obtaining more data about different individuals is irrelevant to the particular case of the patient we wish to treat.’ Cited in Hacking (1990, p. 85f ).

7. Trying to rid itself once and for all of the disrepute surrounding eugenics, genetic counselling has emerged as a forerunner of a new pedagogical effort to educate patients for ‘autonomous decision making’. Shortly after World War II the geneticist Sheldon Reed coined the term ‘genetic counseling’ indicating that the geneticists major concern has shifted from gene pools and populations to the family and the individual (Reed, 1974). In 1975, the Ad-Hoc-Committee on Genetic Counseling conceptualized genetic counselling as a service communicating information and assisting with decision making, see Ad-Hoc-Committee on Genetic Counseling (1975).

8. In German Erbanlagen.

9. The following quotations are taken directly from the transcript of the counselling session.

10. The genetic test result does not predict an individual's future state of health: ‘No predictions can be made about the occurrence of common complications of cystic fibrosis or the severity or course of pulmonary disease, because the wide variability in each group of patients carrying the cystic fibrosis genotype studied’ (The Cystic Fibrosis Genotype-Phenotype Consortium, 1993, p. 1311).

11. With a Masters degree training programme since 1969, genetic counselling has become a growing profession in North America that is almost completely dominated by women. Countries such as Australia, the United Kingdom, Norway and the Netherlands have followed the US model and introduced non-MD genetic counsellors. In other European countries, among them Germany, medical geneticists successfully block any competition in what they consider their own field of competence