The ethos and practice of biomedical professionals in post modern democracies by Stefano Fait

An anthropological and historical analysis of the ethos and practice of biomedical professionals in post-modern democracies

Eugenics, a term coined in 1883 after the Greek eugenes, meaning “wellborn” by the British statistician Francis Galton, Charles Darwin’s cousin, stands for the science studying the most favourable conditions for the reproduction and enhancement of the human species. Galton’s own original definition involved both nature and nurture: the science which deals with all influences that improve the inborn qualities of a race; also with those that develop them to the utmost advantage .1 But he really was a steadfast hereditarian who sought to please his critics 2 and strove all through his life to back up this penchant with solid scientific evidence. 3 Eugenics is, indeed, the “rational management of human reproduction”, the last stage of the process of rationalization of everyday life. It is generally acknowledged that two strands of eugenics existed: negative eugenics was concerned with the elimination of diseases and malformations and involved sterilisation, selective immigration restrictions, birth-control and, in Nazi Germany, killing. Positive eugenics, that is, what in Latin American and Latin European countries went under the name of “social hygiene”, encouraged the reproduction of desirable characteristics and comprised social and family policies, prenuptial certificates, and pro-natalism. Paradoxically, individualistic-egalitarian democratic societies have been second only to Nazi Germany in their readiness to experiment with eugenics. The expansion of social welfare involved the advocacy of new social rights which conflicted with individual rights and narrowed the scope for self-determination (i.e. the tension between individual reproductive rights and the public good). But then again, in societies which tolerate a great deal of social and economic disparities from the moment of a child’s conception, and in which quality and equality are set against each other, the identification of the genotype of future people and the acknowledgement of the right to be well-born will most likely lead to a eugenic revival through reprogenetics. Whether this will be a humanitarian endeavour or turn sour and become a vehicle of further discrimination will depend on individual good will and common sense, and on the far-sightedness of legislators.

HUMANITARIAN EUGENICS?

The rhetoric of a therapeutic intervention upon a sick society was not exclusive to National Socialism. Dreams of a thorough medicalization of society were concocted by those physicians who, emboldened by the steady advance of their discipline, sought to present the Enlightenment as a medical matter4. Paraphrasing Kantâ&#x20AC;&#x2122;s famous definition, German physician Johann Karl Osterhausen described medical Enlightenment as manâ&#x20AC;&#x2122;s emergence from his dependence in matters concerning his physical well-being.5 Many philosophes were very sympathetic to medicine, which they viewed as a testing ground for their theories, and some of them were physicians, surgeons or had a medical degree.6 But whereas philosophers did not really concern themselves with biological inheritance, because they assumed all men to be equal at birth, several prominent physicians, more pragmatically oriented, embraced a militant conception of medicine. They were ready to make value judgements on diversity, as well as to endorse public policies aimed at the prohibition of marriage between mentally or physically unfit individuals and the arrangement of suitable mating.7 The outcome was a schism between Enlightenment empirical science and Enlightenment egalitarian ideals that has lasted to this day, with scientists predicting that science has replaced religion and philosophy as a source of ethical guidelines, and humanists responding that certain basic human values should be held regardless of the cogency of scientific theories. 8 Thus, in an ironic twist of the reformist saga, humanitarian eugenics was confined to the aspirations of some high-minded thinkers. Like all utopias, it grew increasingly anti-egalitarian and incompatible with individual rights, as it elevated abstractions above the entitlements, needs and wishes of actual individuals and families. Ambition and contempt for the weak and the deviant were among the root-causes of the resulting abuses. Millions of people who could not extricate themselves from their contradictions and indigence, who were quite content with their mundane interests and habits, and thus did not plan to become the agents of their own emancipation, could not measure up to the expectations of those intellectuals, politicians and social engineers (let alone callous pragmatists), who hardly ever found themselves on the side of the victims of oppression and abuse, and could not see things from their point of view. These self-proclaimed progressives actually stood on the reactionary side of the political spectrum, 9 and their intransigent and pastoralist efforts to straighten out the crooked timber of humanity are superbly portrayed in the words of Berthold Stauber. 10 After being reproached by his father that it is not only technical proficiency that makes a good physician but also kindness and love of

humankind, Berthold replies that pity is a weakness, and one must have no qualm in sacrificing individuals to the common good: You need only consider that the most honest and consistent social hygiene would have the direct result of annihilating diseased people, or at any rate excluding them from all enjoyment of life, and I don’t deny that I have all kinds of ideas tending in that way which may seem cruel at the first glance. But the future, I think, belongs to ideas. You needn’t be afraid, father, that I shall begin straight away to preach the murder of the unhealthy and superfluous. But theoretically that’s certainly what my programme leads to.

EUGENICS AS A MODERNISATION OFFENSIVE FROM ABOVE

Eugenics was one of the upper classes’ responses to the growing challenge of mass parliamentary democracy and the civil rights movement, and a ‘scientific’ alternative to the embedding of the economy proposed by Marx and by the welfarist advocates of the social protection for the underprivileged. Eugenicists maintained that the socially subordinate were ignorant, sick, and poor because they were naturally inferior. Social issues would be analysed not in terms of what men actually are, but of what they should be – and could eventually be after appropriate interventions. Unsurprisingly, the international eugenics movement was generously subsidised by major corporations like Krupp, Harriman, Carnegie, Rockefeller, Wickliffe Draper, Ford, Kellogg, and Gamble. It took the Great War and the first major crisis of globalised capitalism (1929-1933) to radicalise this project. Between 1928 and 1937, as millions of people were forced to live on state relief programmes and the majority’s sense of collective responsibility for the inclusion and care of a minority of disadvantaged dwindled, Sweden, Canada (Alberta, British Columbia, Nova Scotia), Australia (Tasmania), Norway, Denmark, Finland, Estonia, Latvia, Iceland, Switzerland (Vaud), USA (30 states with California and Oregon taking the lead) and Mexico (Vera Cruz) adopted or toughened sterilisation and segregation laws which would target thousands of women and children. Most women were forced, blackmailed, or cajoled into accepting to be sterilised. There was no such thing as an informed consent and the distinction between consent and compulsion was far from clear. Hundreds, possibly even thousands of sterilisations went unrecorded because official authorisations were often deemed unnecessary. A substantial share of sterilised women were members of ethnic minorities or of newly devised social categories such as the ‘feeble-minded’ or the ‘unfit for procreation and parenthood’. Meanwhile, thousands of purportedly ‘feeble-minded’ children were committed to the now infamous ‘training schools’. In

Germany, between 300,000 and 400,000 citizens were sterilised from 1935 to 1945, and possibly as many as 200,000 mentally retarded and elderly people were murdered between 1939 and 1941. What seemed unthinkable in times of prosperity became commonsensical in times of hardship, when few families were prepared to put up with the social protection of what was perceived to be a disproportionate number of dependent peoples. What followed was an ethical slippery slope in which the suggestion was made that, under exceptional circumstances, basic rights could be withheld (ther exceptional circumstances, ba A pecking order of citizens was introduced, from the hopeless to the perfectible and perfect, the former bound to be a burden to the State budget and therefore dispensable, with a view to reducing the cost of institutional care and poor relief. I would like to suggest that, whether totalitarian or democratic, modern polity has retained several features of the Ethical State, one whose ‘intrinsic morality’ renders its arbitration and dictates on matters of social justice and integration virtually indisputable. Through its blend of moralism, collective responsibility, social utility and regimentation, technocratic and scientistic standards, and an almost missionary commitment to the conversion of chance into necessity, public administrations are still liable to conflate purity, hygiene and social virtues, sin and sinners, and to regard diversity as a preventable impediment to the smooth functioning of modern society. Those bio-medical and social scientists, jurists, philosophers and welfare engineers who had never quite figured out how biologically unequal people could be considered equal before the law, allowed the interests of mainstream society, often remarkably bigot, conformist, xenophobic and unforgiving, to crush the interests of individual citizens. Committed as they were to their ostensibly modernizing and progressive mission, they grew increasingly doctrinaire and singleminded, and never doubted the purity of their motives and the righteousness of their cause, which made them blind to the consequences of their actions. On the other hand, it is bewildering that lay-people, in both totalitarian and ‘democratic’ countries, hardly ever inquired about the ulterior motives of their intellectual and political leadership. The cathartic and pastoral urge of the eugenics doctrine was comparatively more common in Puritan, Pietistic and Calvinist countries, were people appear to be relatively less concerned about issues of confidentiality and state intrusion into the private sphere when, at least nominally, it is a question of collective welfare and solidarity (viz. the ‘deCode affair’ in Iceland) . Having said that, eugenics lobbies were also influential in Cuba, Mexico and US-occupied Japan (and, more recently, in Peru and China), and a melange of biologism, temperance, fatalism, conservationism, hygienism, moral reform, and rational social planning was quite pronounced in

Catholic Bavaria and Austria as well, where it was popularised by numerous gemeinnützige Gesellschaften, the associations for the promotion of science and Lebensreform which, albeit on a far smaller scale, resembled the coeval Swedish Folkrörelser. By contrast, Western European democracies like Britain, France and the Netherlands managed to keep this spate of biological and technocratic essentialism at bay. Fascist Italy is a most informative case-study because, in spite of its large-scale programmes of political medicine and racial segregation, eugenics and racial hygiene were widely opposed. This obviously calls for an instructive cross-cultural comparison of the reception of the nature vs. nurture controversy in different contexts.

In a Weberian fashion, I postulate that religion played a pronounced role. The Council of Trent had rejected the hopeful reliance on free will and good deeds of Pelagius, who accused the Catholics of having espoused St. Augustine’s crypto-Manichean tenets, for they claimed that the original sin was transmitted by propagation rather than by imitation. The Calvinist interpretation of the doctrine of the original sin – the transmissibility of Adam’s sin to his descendants – was even more rigid and inescapable. This translated into genetic determinism, so that born criminals and members of inferior races would bear the indelible stain of the original sin. Furthermore, Catholics maintain that good works, contrition, confession, and penance secure forgiveness, absolution, and, ultimately, salvation, relieving feelings of guilt, and even those who fail that, still have a chance to purify their souls in the Purgatory. Protestants depend on faith alone. This different theological stance is likely to have dramatically affected the development of social reformism and eugenics in Catholic and Protestant countries. In fact, for Roger Cooter phrenology – which paved the way to eugenics – was a secular Calvinism, 11 and André Pichot has called eugenics calvinisme biologique.12 Incidentally, the eugenic and social Darwinist views of Harvard geneticist Edward M. East (1879-1938) were dubbed “Calvinistic predestination in a scientific guise”.13 That there was a close connection between advocacy of eugenics and existential anguish is beyond doubt. Most of the founders of eugenics 14 had been reared by parents with strong religious beliefs, who taught their children the virtues of sexual continence and moral temperance.15 As a result, their understanding of evolution, inheritance, and the fate of the human gene pool was steeped in religious metaphors. Francis Galton and Karl Pearson, the founders of British eugenics, were Quakers, and Quakerism revolves around the notion that the purpose of Creation is human self-revelation and stewardship. Stewardship was also crucial for

numerous American evangelical preachers, who regarded eugenics as the reversal of the Fall and a means to establish the Kingdom of God, 16 a Salvationist discourse which was closely tied with the eschatological orientation of Protestant mysticism and the necessity to improve oneself as evidence of salvation.17 After Weber,18 because faults were personal and not social, and originated from a flawed moral and physical constitution, the consequent sense of inadequacy might have generated a psychological need to become an instrument of divine Providence and confirm oneâ&#x20AC;&#x2122;s election by engineering the Creation.19 Alongside of that, for Calvinists natural law instead of canon law and civil law would determine what is human and which rights that entails, and the defining criteria would stress a distinction in kind rather than by degrees. 20 This is crucial to our understanding of the question, because Catholic universalism could not possibly accept that, nor would it tolerate the doctrine of predestination, which made God responsible for human evil-doing and depravities and abolished free will and the salvational function of good works. Finally, whereas the anthropocentric Catholicism, protracting the confrontation between civitas and silva, stressed the notion of otherworldly transcendence and collective salvation, Protestants, and even more so radical Puritans, viewed human nature more pessimistically, disparaging it for being easy prey to egotism and self-love; pity itself became an act of narcissistic selfishness. 21 But the Protestant attitude to nature in general was more constructive, because it portrayed it as neutral, experimentally verifiable, and alterable by individual initiative. This was certainly a major trigger of the scientific revolution, and of modernity as well. With this in mind, it is most significant that no eugenics law was passed in Britain, the cradle of eugenics. Universal healthcare advocates and social reformers were more influential than eugenicists, and the Church and the Labour Party combined their efforts to nip in the bud all legislative proposals in that direction. It has also been argued that Catholic Irish immigrants, comprising thousands of factory workers who were likely to vote for the Labour party, influenced the party line, and that a predilection for individual self-determination and Social Darwinism within British culture spontaneously undermined eugenics. Still more crucial appears to have been the long tradition of vibrant democracy which, I presume, might also explain the rejection of eugenics in France and in the Netherlands. In Italy, micro-biologist Achille Sclavo (1861-1930), president of the Italian hygiene society, admonished his colleagues not to pursue the dangerous and delusive path of â&#x20AC;&#x153;human zootechnicsâ&#x20AC;? because the human population is not cattle. This view was endorsed by Corrado

Gini, the president of the Italian society of genetics and eugenics (SIGE), the fascist demographer par excellence, and one of Mussolini’s confidents, who argued that it would be impossible to tell the most fit from the less fit. 22 Latin eugenicists rather opted for pro-natalist and sanitary schemes, which centred on puericulture, obstetrics, clinical treatment, statistical surveys, the divulgation of basic information on prophylactic social hygiene, the fight against malaria, goitre, tuberculosis, and venereal diseases. 23 The same is just as true for Latin American countries. Culturalism predominated, bound up with neo-Lamarckian hereditary notions 24 and a persistent hostility to neo-Malthusian moral economy. 25 The definition of eugenics proposed by an Argentinean eugenicist is most telling: hogaría y educación maternológica.26 Equally meaningful was the slogan of Brazilian eugenicists – sanear e eugenizar – which prompted a British eugenicist to remark that what Brazilians interpreted as eugenics was really hygiene and sexology. 27 The Cuban eugenics movement, the most exposed to the influence of American eugenics and, as a result, the most radical of all Latin eugenics movements, eventually failed to translate its goals into law. 28 Mexican eugenicists were for the most part neo-Lamarckian physicians, puericultors, bacteriologists, and embryologists who conflated congenital, infectious, and hereditary diseases. 29 In other words, state interventionism in Latin countries was based on medical expertise and a “soft” theory of heredity, and employed physicians and social scientists, rather than bio-scientists. Thus the “Western world” was anything but homogenous on matters of eugenics policies and theorising. Social hygiene and eugenics represented two distinct strategies for coping with social complexity, cultural diversity, human variability, and individual self-expression, although they shared a predilection for the internalisation of harmony, tidiness, purity, selfrestraint and, under specific circumstances, both targeted idleness, lasciviousness, and greed, and looked at transgression and deviancy as diseases. 30 GENETIC COUNSELLING

Chances are that, following the future advances in the field of genomics, the definitions of humanness and disability will become too fluid to serve any legal, scientific, ethical, and political purpose. The chief predicament we will face is the value we want to attach to the life of disabled people. There are some questions that we cannot possibly sidestep:

If disability is not desirable then why not prevent it?

If some traits are desirable then why not promote them?

Which traits should we engineer and which should we leave to chance?

Obviously, the practice of genetic counsellors will be greatly affected by this debate. However, given the novelty of such a professional figure, the literature on this subject is deficient. The sociological inquiries on the self-perception of genetic counsellors have been few and far between, and next to none those highlighting the training of the professional ideology and ethos of genetic counsellors. During my doctoral fieldwork in Canada and Western Europe I had the opportunity to interview a few of them and, although my sample is certainly too limited and does not enable me to draw meaningful generalisations, I hope that my analysis will persuade other social scientists to tackle this most fascinating topic. Shortly after WWII, in 1947, Sheldon Reed coined the term “genetic counseling”, which would designate the consulting provided to couples with a history of genetic diseases by geneticstrained professionals with a training in genetics. From the inception, practitioners of genetic counseling laid a strong emphasis on neutrality and non-directiveness. However, many among them did not dissimulate their advocacy of eugenics, as they were persuaded that what was wrong with eugenics was not the goal but the means. American genetic counsellor Robert Resta has delved into the past of his profession, revealing the dilemma faced by the founders of American genetic counselling – James Neel, Sheldon Reed, Clarence Oliver, and Lee Dice, the director of the first Heredity Clinic in the United States – who on the one hand were persuaded that eugenics was a noble pursuit – and occasionally lapsed back into the old eugenic ploy of emphasising worst case scenarios, arbitrarily determining what was good for society, and warning against the progressive deterioration of the human genetic pool –, 31 and on the other hand were aware that the time was not ripe for straightforward eugenic counselling. In 1952, Clarence Oliver declared that it was his duty to discourage couples likely to beget children with “undesirable traits” to bring to term the pregnancy. Sheldon Reed, drawing on the rather arbitrary assumption that, as a rule, mentally normal people behave normally and therefore in a socially acceptable manner, concluded that such citizens would voluntarily choose eugenically sound procreation once genetic counselling would be made available. Lee Dice held that genetic counsellors should not merely concern themselves with the well-being of a given family, but also with the undesirable propagation of disadvantageous traits. 32 As to social interventionism, in 1973 James V. Neel, one of the first geneticists to serve as a non-directive genetic counsellor in the 1950s,

submitted that as screening could not pinpoint all genetic predispositions, perhaps we should encourage the total population to embark upon a regime which can only result in better health for the average person.33 The birth of Italian genetic counselling did not differ as markedly as one would expect. A short outline of its dawn will serve to introduce my analysis of the current situation. Luisa Gianferrari was one of the founders of Italian genetic counselling. She was born in Reggio Emilia in 1890 and studied in Rovereto, which at the time was part of the Austrian empire. She then went on to study natural sciences at the University of Innsbruck, in Tyrol, and was awarded a degree in 1914, shortly before the outbreak of the Great War. Later on, she specialised in Berlin and Uppsala and embarked upon a university career that she pursued until 1977, when she died in Liguria. At the outset of her career, she was working under the fascist regime. This had major effects on her attitude to medical genetics and towards the rural and mountain populations that she was expected to medicalise. At that time, the standard view among many scientists and lay-people living North of the Alps had it that the inhabitants of the Alpine valleys differed so patently from the neighbouring populations that they had to be a race apart. 34 Plagued by countless congenital diseases due to consanguinity (physical unfitness), portrayed as slow-minded (mental unfitness), and rumoured to indulge in unnatural acts (deviancy), it is unlikely that physicians could be entirely impervious to such prejudices. Unsurprisingly, Gianferrari used the verb “bonificare” [“to reclaim”], which aptly describes a situation in which scientists would rehabilitate the “indigenous people”, while reinforcing their government’s territorial claims. It is conceivable that Gianferrari’s aim was to suggest a relation between her effort and Mussolini’s massive reclamation of the Italian wetlands with a view to the eradication of malaria and as a response to mass-emigration. Luisa Gianferrari stressed that only rigorous studies and objective research would guarantee that such reclamation of “tainted” rural and alpine people could serve the aims of fascist demography and achieve the physical enhancement of the Italian stock (miglioramento della stirpe). But such thorough inquiries could only be carried out by clinical geneticists. She then lamented that there were too few of them in Italy. The introduction of genetics courses in medical curricula could not be deferred. 35 On the same occasion, she also proposed the establishment in Milan of an Italian Centre of Human Genetics and Eugenics modelled after the British and American institutes. On January 1, 1940 she was finally appointed director of the

Centre, which was inaugurated in Milan and would collect and catalogue genealogical and clinical data across Lombardy. Students of medicine who had scored high marks in Genetics and Biology of Races (Biologia delle Razze) would be employed as surveyors, interviewing patients and their families, and transcribing the most significant case histories and hospital discharge data. Through this documentation, pedigree charts would be drawn, while clinical data repositories would be created, for the study of inheritable pathologies.36 By 1944, genealogical charts and medical case histories numbered some 100,000, over a thousand of which referred to homozygous and dizygous twins, and more than 500 surveyors were employed,37 so that Gianferrari felt she was about to fulfil her old dream of extending the domain of inquiry to include artistic, technical, and management talents. 38 In 1932, she had looked into the transmission of musical talents among high school students 39 and, noting that the most gifted young composers had imaginative and clumsy mothers with unequivocal literary skills and a calm and restrained father, she had deduced that inventiveness and artistic proficiency might be inherited through the maternal line.40 Now she was in the position to test her hypothesis by having an entire valley surveyed, i.e. Val Vigezzo, which was well known for its many accomplished painters, drawers and sculptors. 41 This Galtonian interest for the inheritability of talent, which she shared with Norwegian racial biologist Jon A. MjĂśen, 42 is quite understandable, given that her father and one of her best friends were popular composers. Her ultimate purpose was to create a network of genetic archives collecting data on inheritable pathologies and disorders, as well as to launch a genetic census of the Italian population that would produce pedigree and prognostic charts for all citizens. 43 Given the popularity of this sort of enterprises in fascist Italy, one would expect that her plan for a nationwide classification and filing would be readily endorsed by Mussolini. However, contrary to Gianferrariâ&#x20AC;&#x2122;s assertion that her project had been thwarted by the war and the devastating bombings of Milan, the fact of the matter is that the fascist establishment was at the very least indifferent, if not hostile, to it. Between 1924 and 1928, several Italian gynaecologists, sexologists, and physicians had endeavoured to set up clinics for hygienic and eugenic counselling in the North-West and in Naples, but their attempts had been crushed by the fascist authorities, worried that this might some day give legitimacy to birth control, which had been proscribed by the strongly pro-natalist regime. When, in the post-war years, Gianferrari resumed the idea of a national genetic archive, the ideological climate had changed, but the plan did not fall on receptive ears. Nevertheless, the

Consultorio italiano di genetica umana (Human genetics guidance clinic) for prenuptial and postmarriage eugenic (sic!) prevention opened in Milan in 1946, mainly servicing those people who were partaking in the concomitant population genetics studies. Counsellors would draw their patients’ family trees, calculate the transmissibility of genetic conditions, and inform them about the advisability of their union via their family doctors. Gianferrari took great pride in learning that Dutch and Swedish medical authorities were monitoring the Italian experiment and that France and Portugal fashioned their genetic counselling services after the Italian model. 44 Giuseppe Morganti, one of Gianferrari’s associates, cited two factors that had delayed such an important accomplishment.45 - widespread ignorance about genetics, partly due to a generic but extensive distrust of eugenics, which in turn was rooted in the Italian moral, religious, and cultural tradition, and had been further reinforced by the coercive solutions applied abroad; - lack of human genetics research institutes staffed with specialists and equipped with the latest technologies. Now that the institute had been realised - he observed -, the whole diagnostic process should be marked by great caution, because patients sometimes hide important information or simply lie to their counsellors, and because the complexity of their task make geneticists especially fallible. Nevertheless, this note of caution did not imply that privacy, neutrality, and free, informed consent were the cornerstone of counselling, as it is today. According to Morganti, eugenic counselling was in the interest of the stirpe (“stock”), and therefore it had to be centralised: at regular intervals, hospitals, clinics and medical schools would be expected to send copies of the most informative case histories to a National Archive. Finally, he suggested that eugenic counselling should be made compulsory for all couples planning to marry, to the extent that they have a duty to provide their offspring with a healthy constitution, together with an adequate education. After all, the rehabilitation of the “unfortunates” was costly and their reintegration into civil society would cause more of them to be born. 46 In Morganti’s view, because medical genetics was steadily progressing and many conditions were bound to be cured, people should reject the fatalism that had shrouded genetic diseases. These should be regarded as curable diseases, not unlike other illnesses, and social hygienists and geneticists were bound to collaborate, combining prevention and therapy. At the same time, he believed eugenic counselling should remain a public endeavour and that private clinics should be overviewed by the State,

because the risk of malfeasance, malpractice, and malevolence on the part of poorly trained counsellors was unacceptable. On this subject, Gianferrari was explicit in opposing coercive measures, for they were against the moral and juridical rights of humanity. 47 Most interestingly, Gianferrari and her staff continued to use the term eugenic counselling well into the Fifties, and in a paper she presented at the Fifth European congress of haematology, she reiterated that the usefulness of genetic counselling lies in the promotion of a eugenic conscience. 48

Even today, directive counselling is not unanimously opposed in Europe 49. The North American commitment to neutrality has come increasingly under attack by genetic counsellors themselves.50 Some argue that the excesses of free market and social coercion cannot be contrasted by genetic counsellors. 51 Others point out that counselees are more resourceful and resilient than many professionals have come to believe and that genetic counselling should be viewed as an interactive process (shared decision making), involving a great deal of psycho-social consideration that clients may have not contemplated.52 What’s more, it is argued that unacknowledged directiveness could prove to be even more manipulative. 53 This is where my fieldwork data could prove useful. The most complete and insightful work on genetic counsellors’ self-perception is in my view Charles Bosk’s “All God’s mistakes” (1992). Having the opportunity to devote a great amount of time to the investigation of the practice of genetic counselling in the USA, Bosk produced a great deal of keen and instructive observations. By and large, Bosk remarks that this group of medical professionals has been humbled by the treadmill character of their duties, that do not involve states of emergency, direct life-and-death decisions, and sometimes not even the gratitude of patients. In most cases pre- and post-clinical meetings centre on the discussion of scientific publications and the display of sometimes rather distressful pictures of severely abnormal children. Given their professional ethos, genetic counsellors are not permitted to make a decision for the prospective parents who have come to see them prompted by deep concerns about the health of the foetus. Although in most countries genetic counselling is directive because it is thought that one of the chief aims of such a profession is to decrease the frequency of harmful genes in the population, in North America they must be absolutely neutral and nondirective. Consequently, the pressure and the associated sense of empowerment that typifies their colleagues’ practice is somewhat lessened. This impression is borne out by the experience of one

of my informants who, to my observation that they are compelled to cling to a non-human imperative of neutrality and non-directiveness, responded as follows: You’re right. Patients often get frustrated because they come to the appointment expecting to be told what to do. After all, that's what most people in the medical profession do. But what we can do is ask them questions to help bring out what would be best for them. And based on their answers we can say things like "Well, based on what you've told me it might be best for you to. . . . ." Besides giving information, we help them come to a decision that's best for them. My informants agreed on this point. In Italy, a more nuanced reading of genetic counsellors’ profession and ethical duties was provided: I think for us…what you say about the almost inhuman non-directiveness, the relief of responsibility, etc. is more appearance than reality. And I’d dare to say, luckily so (at least from a certain perspective). Our cultural background is somehow always there. I say that with no pretence of superiority, really. On the contrary this can be sometimes an obstacle. But then again, as a woman, that helps a little. Anyway, in my opinion, the more I do this job, the more questions and the fewer answers I’ve got. And I am not saying this for the sake of the argument. I do believe that. At the end of the day, and I say this in a whisper, I detest bioethics. Hope it doesn’t sound like a blasphemy. And yet, as you can see, I really love talking about bioethics. Bosk is probably right when he states that American genetic counsellors seem to display a more humble approach to health-care and that this is mainly due to the fact that their only function is that of decision-facilitators rather than decision-makers. One of the critical issues is whether this role could ever be perceived as dissatisfying by their patients/clients, and whether a different cultural climate could lead them to push for a change of attitude. This is not an implausible scenario given that, according to a recent survey, 20 percent of American fertility specialists declared that a woman should terminate the pregnancy if the screening shows that the embryo has a predisposition to obesity.54 The one thing we can take for granted is that young genetic counsellors do envisage their future profession as a true vocation. Their keen enthusiasm is almost unparalleled. I distinctly remember the moment one of them exclaimed: We are pioneers, damn it! This is also partly due to the fact that many never found laboratory work gratifying – some felt they were clumsy, others thought they had no knack for experimentation – while they saw genetic counselling as an amazingly effective way to apply their expertise to real life predicaments. This sense of being substantially serviceable to human beings in their most difficult choices is definitely what set them apart from other specialists. They could barely contain their contagious passion for what they were doing and wishing to accomplish in the years to come. I am rather sceptical about the assertion of one of Bosk’s interviewees, who explained that he frequently thought of himself as an astronaut boarding a spaceship heading for a different planet, a planet where terrible things happened, things that would not happen on his own planet.

My participant observation revealed no such schizoid experiences. Genetic counsellors were neither light-hearted nor hardened by unpleasant experiences, neither heroic nor unusually wise. They were more or less regular human beings who positively believed that their work was truly beneficial for many families. So, when I put forward my views on how the practice of genetic counselling might change over the next decades, one of them commented: You might develop a sense of powerlessness as more and more information will be available and there will be a shortage of professionals like you (massive pressure), and there will also be confusion about the definition of what is normal and what is not, what is a disease and what is not, what is good and what is bad (massive ethical dilemmas) And another one: Yes, there is a lot of controversy out there right now. For example, we had a group from the Disability Office come and talk to us who were against termination as they see their disad talk to us who were against tesability. The deaf community is really big on this. But everyday there are couples terminating for the same disabilities these people have (who live full and happy lives). They do believe that the game is worth the candle. Accordingly, the same informant added: I don't agree that we will become eugenicists. I believe we offer choices. It's been done where a baby has been selected to be deaf as the couple were deaf and lived in the Deaf community. We can help couples have children without debilitating disease - which isn't really eugenics but more about health care. There is the possibility of choosing children for certain traits in the far future, but nuclear energy also brought the atomic bomb. It's about how we use the information. Still, counsellors must ignore the collective implications of their practice, neglect issues of justice and equality and view their patients as clients, or else they could undermine the theoretical and moral premises of their profession. They are facilitators, not decision-makers, agents of freedom not of its curtailment. But then again, how are they supposed to tackle such tremendously intricate questions as the meaning of health, happiness, normalcy, dignity, and solidarity? Where would they draw the line in a free market where the individual is entitled to buy genetic services? And how could they act morally in a coercive and discriminatory social context if they are bound to maintain a non-directive stance? Some scholars have argued that the technical and ethical training of genetic counsellors ought to be complemented with the teaching of the limits of any claims of neutrality, equitability, and non-directiveness.55 We should carefully consider this proposal, for in the years to come, genetic counselling might well become a lifestyle 56 and a differential access to modern techniques has already been detected with respect to IVF treatment.57

CONCLUSIONS Nowadays a new brand of eugenics lies ahead, There are four possible types of interventions on our DNA that have been classified as eugenic: somatic cell gene therapy, which eliminates the clinical manifestation of genetically-caused disease on an individual without affecting the individual’s progeny; 58 germline gene therapy, that is, the insertion of a healthy gene into a human egg; enhancement genetic engineering, which refers to the modification of single traits in an individual (e.g. a child’s height); eugenic genetic engineering, namely the alteration of complex traits involving multiple genes, such as intelligence and personality (at best a remote prospect).59 The problem is not whether these procedures will ever be applied, for that is past doubt, but what kind of social repercussions they are likely to produce. In the worst-case scenario, we will witness the devaluation of life, exemplified by the view of the embryo as a “clump of cells” or a “pile of raw material”; the alteration of our conception of parental and filial relationships, following a shift from child as a gift to child as a valuable property, a self-designed product, a long-term project, a means of self-fulfilment (commodification of babies, paternalism); discrimination in insurance, employment, healthcare provision, and so forth. 60 The systematic screening of foetuses will not prevent all “defective children” from being born and therefore the few who will manage to slip through the net will probably be the object of discrimination, whether we like it or not. 61 We should also add the manufacturing of humans for hedonistic and utilitarians ends, such as chimeras, half-human beings (“parahumans”) that would be employed for menial jobs or to supply organs for transplanting.62 The state would not necessarily play a part in all this. Paradoxically, state intervention would be needed precisely in order to avert the danger that socio-economic disparities could be transformed into a process of speciation. This is why we should pay heed to what Kant had to say about human nature: aus so krummem Holze, als woraus der Mensch gemacht ist, kann nichts ganz Gerades gezimmert werden..63 I believe its relevance is still compelling.

Notes

Galton, 1904. 2

Cowan, 1977.

Bulmer, 1999.

Vila, 1998.

Gay, 1969: p. 17

Barber, Brumfitt et al., 1967.

Hilts, 1984.

Hecht, 1999.

If we agree on the classic dualism Left/egalitarian/original virtue/ changeable human nature (Rousseau) vs.

Right/differentialist/original sin/inalterable human nature (Nietzsche). 10

Schnitzler, 1908.

Cooter, 1984.

Pichot, 2000.

Vicedo, 1999.

And of its antecedent, namely phrenology

Kevles, 1985.

Durst, 2002; Rosen, 2004.

Kirschner, 1996.

Weber, 2000.

Poggi, 1984.

Goodey, 2001.

Fiering, 1976.

Pogliano, 1984.

Beltr達o Marques, 1994; Mantovani, 2004.

Nash, 1992; Schneider, 1982.

Cleminson, 1994.

“familism and maternalism”. Stepan, 1991.

Cleminson, op. cit.

González, Peláez, 1999.

Stern, 1998.

Bonetta, 1990.

Resta, 1997.

Resta op. cit.

Hilton 1973: p. 359.

Conte and Essner, 1995.

Gianferrari, 1937.

Gianferrari, 1941.

Gianferrari, 1944.

Gianferrari, 1941, op. cit.

Gianferrari, 1932.

Gianferrari, Cantoni 1942.

Gianferrari, 1944, op. cit.

Mjøen, 1925.

Gianferrari, 1941.

Gianferrari, 1949.

Morganti, 1947.

As far as Italy is concerned, this remains one of the most straightforward, unmistakable admissions of eugenic sympathies I

have come across in the course of my studies. 47

Gianferrari, 1949, op. cit.

Gianferrari, 1955.

Cohen, et al. 1997; Wertz, 1998; Rapp, 2000.

McConkie-Rosell and Sullivan, 1999.

Harper and Clarke1997.

Benkendorf and Prince, 2002; McCarthy Veach et al. 2002; Weil, 2003.

Williams, 2002.

Bach and De Kleine, 1999.

Bosk op. cit.; Bartels et al. 1993.

Conrad and Gabe, 1999.

Lynn-Steinberg, 1997.

This, in my opinion, has liabe, 1999.

Lynn-Steinberg, 199rather part and parcel of customary medical therapy. 59

Vollrath, 1990); Gavroglu et al., 1995.

MacIntyre, 1997.

Sumner and Boyle, 1996.

Rorvik, 1971.

“From such crooked timber, as humanity is made of, nothing straight can be wrought”. Kant, 1784.

References

Bach, U., De Kleine, A. (1999), Auf dem Weg in die totale Medizin? Eine Handreichung zur „Bioethik“ – Debatte, NeukirchenVluyn: Neukirchener. Barber, W.H., Brumfitt, J. H. et al. (eds.) (1967), The age of the Enlightenment, Edinburgh & London: Oliver and Boyd. Beltrão Marques, V.R. (1994), A medicalização da raça: médicos, educadores e discurso eugênico, Barão Geraldo, Campinas, Brasil: Editora da Unicamp. Benkendorf, J. L., Prince, M. B. (2002), „A conversation about the indirect road to non directive genetic counseling a defining moment through research”, Journal of Genetic Counseling, Vol. 11, No. 4. Bonetta, G. (1990), Corpo e nazione. L’educazione ginnastica, igienica e sessuale nell’Italia liberale, Milano: FrancoAngeli. Bosk op. cit.; Bartels et al. (eds.) (1993), Prescribing our future. Ethical challenges in Genetic Counseling, New York: Aldine de Gruyter. Bulmer, M. (1999), “The Development of Francis Galton’s Ideas on the Mechanism of Heredity”, Journal of the History of Biology, 32: 263–292. Cabanis, P. J. G. (1956). Ouvres Philosophiques (Tome I), Paris: Presses universitaires de France.

Cleminson, R.M. (1994), “Eugenics by Name or by Nature? The Spanish Anarchist Sex Reform of the 1930s,” Hist. Eur. Id, 1994, XVIII, 5, pp. 729-40. Cohen, P. et al. (1997), “Genetic counseling practices in Germany: a comparison between East German and West German geneticists”, Journal of Genetic Counseling, Vol. 6, No. 1, pp. 61-80. Colla, Piero S. (2000), Per la nazione e per la razza: cittadini ed esclusi nel "modello svedese", Carocci: Roma. Condorcet, M.J.A.N. (1970), Esquisse d’un tableau historique des progresse de l’esprit humain, Paris: J.Vrin. Conrad, P., Gabe, J. (1999), Sociological perspectives on the new genetics, Oxford: Blackwell Publishers. Conte É., Essner, C. (1995), La quête de la race, une anthropologie du nazisme, Paris: Hachette. Cooter, R. (1984), The cultural meaning of popular science: phrenology and the organization of consent in nineteenth-century Britain , Cambridge [etc.]: Cambridge University Press. Durst, D. L., (2002), “Evangelical Engagements With Eugenics, 1900-1940”, Ethics Med., 18,2, pp. 45-53. Fiering, N. S. (1976), “Irresistible compassion: an aspect of eighteenth-century sympathy and humanitarianism”, Journal of the history of ideas, Vol. 37, No. 2, pp. 195-218. Galton, F. (1904), “Eugenics: Its Definition, Scope, and Aims,” American Journal of Sociology, Vol. X, No. 1, pp. 1-6. Gavroglu, K. et al. (eds) (1995), Science, Politics, and Social Practice Dordrecht [etc.]: Kluwer Academic Publishers. Gay, P. (1969). The Enlightenment: an interpretation. Vol.2, The science of freedom, London: Weidenfeld & Nicolson, p. 17. Gianferrari, L. (1941), “Il contributo dell’università al centro di studi di genetica umana”, Ann.Univ.It., III, p. 1. Gianferrari, L. (1932), “Su l’eredità del talento musicale”, Atti della Soc. It. di Scienze Naturali, LXXXI. Gianferrari, L. (1937), “Importanza, urgenza di ricerche genetiche in popolazioni endogame”, Atti e Memorie della Società Lombarda di Medicina, Vol. V, N. 8. Gianferrari, L., Cantoni, G., (1942), Manuale di genetica, con particolare riguardo all’Eredità nell’Uomo, Milano: Vallardi. Gianferrari, L. (1944), “Sull’organizzazione e sull’attività svolta dal Centro di Studi di Genetica umana nel primo quadriennio dalla sua fondazione”, Rivista di Scienze Naturali “Natura”, Vol. XXXV, pp. 112-16. Gianferrari, L. (1949), “Proposte per l’inquadramento della prevenzione eugenica prematrimoniale nell’organizzazione sanitaria italiana”, La Settimana Medica, Vol. 37, n. 21, pp. 511-14. Gianferrari, L. (1955), “La consulenza eugenica nelle empatie ereditarie”, Proceedings of the V. Kongreß der Europäischen Gesellschaft für Hämatologie in Freiburg i.B., pp. 424-25. González, A. G., Peláez, R. A., (1999), En busca de la raza perfecta : eugenesia e higiene en Cuba, 1898-1958, Madrid: CSIC. Goodey, C. F. (2001), “From natural disability to the moral man: Calvinism and the history of psychology”, History of the Human Sciences, Vol. 14, No. 3, pp. 1-29

Harper, P. S., Clarke, A. J. (1997), Genetics, society and clinical practice, Oxford: Bios scientific publishers Ltd. Hecht, J. M. (1999), “The solvency of metaphysics: the debate over racial science and moral philosophy in France, 1890-1914”, Isis, vol. 90, No. 1, pp. 1-24. Hilton B. (et al.) (eds.) (1973). Ethical issues in human genetics, New York, London: Plenum Press, p. 359. Hilts, V. (1984), „Enlightenment Views on the Genetic Perfectibility of Man”, in Mendelsohn, E. (ed.), Transformation and tradition in the sciences, Cambridge: Cambridge University Press. Kant, I. (1784), „Idee zu einer allgemeinen Geschichte in weltbürgerlicher Absicht“, Berlinische Monatsschrift, November 1784 Kevles, D. J. (1985), In the name of eugenics. Genetics and the uses of human heredity, New York: Alfred A. Knopf. Kirschner, S. R. (1996), The religious and romantic origins of psychoanalysis, Cambridge [etc.]: Cambridge University Press. Lynn-Steinberg, D. (1997), Bodies in glass. Genetics, eugenics, embryo ethics, Manchester University Press: Manchester University Press. MacIntyre, S. (1997), “Social and psychological issues associated with the new genetics”, Philosophical Transactions: Biological Sciences, Vol. 352, No. 1357, pp. 1095-101. Mann, G., Winau R. (eds.) (1977), Medizin, Naturwissenschaft, Technik und das Zweite Kaiserreich, Göttingen: Vandenhoek & Ruprecht. Mantovani, C. (2004), Rigenerare la società. L’eugenetica in Italia dalle origini ottocentesche agli anni Trenta, Soveria Mannelli: Rubbettino. McCarthy Veach, P. et al. (2002), Commentary on genetic counseling – A profession in search of itself, Journal of Genetic Counseling, Vol. 11, No. 3. McConkie-Rosell, A., Sullivan, J. A. (1999) Genetic counseling – stress, coping, and the empowerment perspective, Journal of Genetic Counseling, Vol. 8, No. 6, pp. 345-57. Mjøen, J. (1925), „Zur Erbanalyse der musikalischen Begabung“, Hereditas, 7, pp. 161-88. Morganti G. (1947), “Il consultorio genetico italiano”, Atti del convegno internazionale per la trattazione dei problemi medico-sociali di profilassi pre-matrimoniale. Nash, M. (1992), “Social Eugenics and Nationalist Race Hygiene in Early 20th Century Spain”, Hist. Eur. Id, 15, pp. 741-48 Pichot, A. (2000), La société pure, de Darwin à Hitler, Paris: Flammarion. Poggi, G. (1984), Calvinismo e spirito del capitalismo. Contesti della “tesi di Weber”,Bologna: Il Mulino. Pogliano, C. (1984), “Scienza e stirpe: eugenica in Italia 1912-1939”, Passato e Presente 5, Rivista di storia contemporanea, pp. 61-97. Rapp, R. (2000), Testing women, testing the fetus: the social impact of amniocentesis in America, New York: Routledge. Resta, R. (1997), “Eugenics and nondirectiveness in genetic counselling”, Journal of Genetic Counseling, 6, 2, pp. 255-58. Rorvik, D. M. (1971), Brave New Baby. Promise and peril of the biological revolution, Garden City, New York: DoubleDay & Co.

Rosen, C. (2004), Preaching Eugenics: Religious Leaders and the American Eugenics Movement,Oxford: Oxford University Press. Schneider W. (1982), “Toward the improvement of the human race: the history of eugenics in France”, The Journal of Modern History, Vol. 54, No. 2, pp. 268-91. Schnitzler, A. (1908, tr. 1923), The Road to the Open, New York: Alfred A. Knopf. Cowan, R. Schwartz (1977), “Nature and nurture: the interplay of biology and politics in the work of Francis Galton”, Studies in the History of Biology 1, 133-208; Stepan, N.L. (1991), The Hour of Eugenics: Race, Gender, and Nation in Latin America, Ithaca: Cornell University Press. Stern, A. (August 1, 1998) “Unraveling the History of Eugenics in Mexico”, http://www.ferris.edu/isar/archives/sources/mexico.htm (March 2005). Sumner, L.W., Boyle, J. (eds.) (1996), Philosophical perspectives on bioethics, Toronto [etc.]: University of Toronto Press. Vollrath, J. (1990), Science and moral values, Lanham [etc.]: University Press of America. Weber, M. (2000), Die protestantische Ethik und der Geist des Kapitalismus, Weinheim: Beltz. Weil, J. (2003), “Psychosocial genetic counselling in the post-nondirective era: a point of view”, Journal of Genetic Counseling, Vol. 12, No. 3. Wertz, D. C. (1998), “Eugenics is alive and well: a survey o genetic professionals around the world”, Science in context, 11, 3-4, pp. 493-510. Vicedo M., (1999), “The laws of inheritance and the rules of morality”, in J. Maienschein and M. Ruse (eds.), Biology and the foundation of ethics, Cambridge: Cambridge University Press), 225-57. Vila, A. (1998), Enlightenment and Pathology: Sensibility in the Literature and Medicine of Eighteenth-Century France, Baltimore: Johns Hopkins. Williams, C. et al. (2002), “Is nondirectiveness possible within the context of antenatal screening and testing?”, Social Science & Medicine, Vol. 54, Issue 3, pp. 339-347.