eugenics and its relevance to contemporary health care

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2000 7: 205Nurs EthicsRachel Iredale

Eugenics and its Relevance to Contemporary Health Care

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EUGENICS AND ITS RELEVANCE TOCONTEMPORARY HEALTH CARE

Rachel Iredale

Key words: eugenics; genetics; health care

Recently there has been a revival of interest in the theory and practice of eugenics byboth academics and lay people. The ongoing revolution in biology and the increasingability to acquire genetic information has led to concerns about genetics being used againfor sinister eugenic ends. Although the goals behind traditional eugenics – the mini-mization of disease and the improvement of human health – remain unchanged, themeans by which these goals should be achieved have altered significantly. However, indebates about the impact of human genetic research, eugenics is sometimes viewed as apurely historical phenomenon and its relevance to the current situation is minimized.This article outlines the history of the eugenics movement, describes some eugenic prac-tices, and explores why an appreciation of these historical debates is important for nurses.

IntroductionAs a result of genetic developments since the early 1970s, new knowledge andsubsequently new forms of control over DNA, human biology and the physio-logical processes relating to health and disease have begun to emerge. However,the rapid and accelerating progress being made in what is now being referred toas the ‘new genetics’ has consequences far beyond the application of genetic tech-nologies and techniques in laboratory settings. Swiftly accumulating geneticknowledge from the Human Genome Project is promising to revolutionize thestudy and treatment of genetic diseases, especially those that are severely dis-abling or fatal, or for which contemporary treatments are not appropriate.

According to Lessick and Williams,1 nurses must stay informed about discov-eries generated by the Human Genome Project so that they can apply this knowl-edge in nursing practice. Other authors argue that nurses need to be at theforefront of these advances, to describe their effects to the public and individualpatients, and to create innovative strategies to manage negative effects.2 For exam-ple, Fernbach and Thomson3 state that nurses must be able to identify individu-als who can benefit from genetic testing, communicate effectively regarding the

Nursing Ethics 2000 7 (3) 0969-7330(00)NE346OA © 2000 Arnold

Address for correspondence: Rachel Iredale, Senior Lecturer, Nursing and Midwifery ResearchUnit, School of Care Sciences, University of Glamorgan, Pontypridd, Mid Glamorgan CF37 1DL,UK.

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risks and benefits of this testing, and support them once results become available.Nurses must therefore understand the science, ethics, safety considerations andsocial consequences of genetics. However, this article argues that it is equally asimportant for nurses to have an appreciation of the history of genetics and anunderstanding of how it was once used for eugenic ends at the beginning of thetwentieth century. This appreciation and understanding is crucial, especially asthe eugenic ideals of minimizing disease and improving the health of the humanrace are still widespread in the practice of health care today.

The development of new genetic technologies has resulted in comparisonsbeing drawn between the many horrendous atrocities once perpetrated in thename of eugenics and what might happen in the future. In the minds of mostpeople, eugenics is usually associated with enforced sterilization, racism, restric-tive immigration policies and Nazi concentration camps.4 There is a danger thatthe public and nurses will look at the new genetics and simply claim that it isunacceptable to them because of the past. The history of eugenics in the twenti-eth century suggests that this is a legitimate fear that needs to be addressed.

The eugenics movementAlthough the word ‘eugenics’ was popularized by Francis Galton (1822–1911), theintellectual history of eugenics goes back centuries to the philosophers of ancientGreece. Eugenic ideas were discussed by Plato in The republic, when he stated that‘defective off-spring . . . will be quietly and secretly disposed of’ and that medi-cine administered by the state ‘will provide treatment for those . . . citizens whosephysical and psychological constitution is good; as for the others, it will leave theunhealthy to die’ (p. 174).5 Eugenic thought was also apparent in Roman times;the Spartans used to cast out babies who were considered unfit (in some casesbeing female was considered unfit), in order to keep their stock ‘pure’. Theseeugenic opinions were justified as socially acceptable because they were presentedin terms of being in the interests of the state. This concern with the interestsof the state was part of Galton’s transformation of eugenic ideas into a socialtheory.

Francis Galton was an upper-class Englishman, a gentleman scientist, anexplorer and a cousin of Charles Darwin. He is generally considered to be thefounder of the eugenics movement.6 He was looking for:

A brief word to express the science of improving the stock, which is by no means con-fined to questions of judicious mating but which, especially in the case of man, takescognizance of all the influences that tend in however remote a degree to give the mostsuitable races or strains of blood a better chance of prevailing speedily over the lesssuitable than they otherwise would have had (pp. 24–25).7

Coining the word eugenics from classical Greek roots (‘eu’ meaning ‘well’ and‘genos’ meaning ‘birth’), Galton claimed that this new concept should focus on‘the study of agencies under social control that may improve or impair the racialqualities of future generations, either physically or mentally’ and that it shouldbe a ‘science which deals with all influences that improve and develop the inbornqualities of a race’ (p. 82).8 In 1904 Galton founded the National Eugenics

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Laboratory, followed by the Eugenics Education Society in 1907, whose aim wasto educate the British public about eugenics. He also established the academicjournal, Eugenics Review.9

Although interest in eugenic ideals first arose in Britain, it spread rapidly tomost of the industrialized areas of the world by the turn of the century. Therewere eugenic movements in many other countries, even in those with such dis-parate cultures as the USA, Canada, Russia, France, Norway, Sweden, Italy,Argentina, Mexico, South Africa, India, China and Japan.10 Most industrializedsocieties were experiencing similar changes and patterns of development at thestart of the twentieth century. The pre-existing intellectual climate of socialDarwinism, in conjunction with the literature produced by leading eugenicistsand the experience of rapidly changing social conditions, such as continued indus-trialization, the growth of big businesses, the sprawling of cities and slums, andmassive migrations from the countryside and abroad, all combined to create pop-ular eugenics movements in many places.11

Searle has aptly summarized the popularity of the eugenics movement inBritain before World War II.12 He claims that it gained popularity because sciencewas held in high esteem during the first half of the twentieth century; it providedvalidation of class and racial inequalities; it was a response to perceived ineffi-ciencies in social welfare policies, and it provided an alternative to what wasthought of as the facile environmentalism of the late Victorian era (pp. 114–15).12

The factors he discusses with regard to Britain were applicable to both the USAand Germany and to eugenics movements world-wide. All societies had poverty,crime, prostitution, alcoholism and disease, which were believed to be geneticallyrelated and hence amenable to eugenic measures,13 but they had never before‘possessed the weight of statistical information, expanding yearly by volumes,that numerically detailed the magnitude of its problems’ (p. 72).14 All of theseissues provided the backdrop against which eugenics could flourish.

Eugenic practicesGalton divided the practice of eugenics into two types – positive and negative –both of which endeavoured to improve the human race through selective breed-ing. Positive eugenics aimed at encouraging parents with characteristics or traitsthat were deemed laudable by society to produce more children, whereas nega-tive eugenics attempted to minimize the transmission to future generations oftraits that were life-threatening, harmful or of no civic worth. The policy mea-sures that were advocated by early eugenicists during the first decades of thetwentieth century in pursuit of both positive and negative eugenics wereextremely varied. Policies for negative eugenics, however, were far more commonand more frequently implemented, and so are discussed first.

The first systematic attempts to develop mandatory negative eugenic policiesand programmes occurred in the USA. Some of these included: stringent mar-riage laws which prevented the marriage of ‘undesirables’, such as people withlearning difficulties; voluntary and compulsory sterilization; sexual segregationof people with physical and mental disabilities; stricter control of immigrants; andpremarital physical examinations. The primary aim of these programmes was to

Eugenics and its relevance to contemporary health care 207




prevent reproduction by people who were judged to be unfit. Included in thiscategory of the ‘unfit’ were those suffering from ‘insanity, epilepsy, alcoholism,“pauperism”, criminality, “sexual perversion”, drug abuse, and especially “fee-blemindedness” ’ (p. 230),15 as well as those suffering from tuberculosis andsyphilis.16

Of all of these negative eugenic options, sterilization was the one that was prac-tised the most widely. In Germany, for example, between 1900 and the 1930s, atleast 200 000 persons who were deemed unfit to reproduce were sterilized.17 Inthe USA in 1927, a notorious Supreme Court case upheld a state statute for ster-ilizing Carrie Buck, a ‘feeble-minded eighteen year old who was the daughter ofa feeble-minded mother and the mother of an illegitimate feeble-minded child’(p. 18).18 Individuals with mental defects were believed to have inherited theircondition and were thought to be incurable. The eminent American judge, OliverWendall Holmes, speaking for the Supreme Court, claimed:

It is better for all the world, if instead of waiting to execute degenerate off-spring forcrime, or let them starve for their imbecility, society can prevent those who are mani-festly unfit from continuing their kind . . . Three generations of imbeciles are enough.19

Positive eugenic policies covered measures designed to encourage the procre-ation of ‘better children’ and the promotion of a ‘eugenic conscience’ in society.Many positive eugenicists tended to be social radicals, such as George BernardShaw, and were often inclined to utopian visions. Galton, however, advocated asystem of arranged marriages between persons of distinction in order to producegifted children. He argued that, in order to augment favoured stock in Britain,diplomas should be given to young people of the higher classes and their inter-marriage encouraged.20 One example of a positive eugenic programme thatreached fruition was the special maternity hospitals and homes for expectantmothers in Germany that were part of Heinrich Himmler’s Lebensborn pro-gramme.17 Other examples included calls for the registration of midwives in thehope that the general standard of childcare would be improved. In the UK pro-posals were made for ‘tax rebates to help cover the costs of maternity and child-rearing, especially for meritorious families’ (p. 91).14

It is important to remember that many prominent names in public health,medicine, politics, science and social work in every country were associated withthe eugenics movement. Before World War II eugenics was institutionalized in

. . . the Galton Laboratory for National Eugenics at University College, London, headedby Karl Pearson; the Eugenics Record Office at Cold Spring Harbor on Long Island,headed by Charles B Davenport; and the newly created Chair for Race Hygiene at theUniversity of Munich (p. 275).21

Although eugenics is usually associated with right-wing extremists, those onthe left of the political spectrum were also sympathetic to eugenic ideals. Modernsupporters of the political left often gloss over the many historical links witheugenics.13 Eugenic thought was in close continuity with the classical ideology ofthe British bourgeoisie and ‘many intellectuals had reached maturity in the epochin which social administration and eugenics were closely intertwined’ (p. 170).22

However, World War II and its aftermath, during which the horrors of medicalexperimentation and mass extermination were revealed, is often seen as the deci-

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sive factor in the rejection of eugenics. After the War, public opinion rejectedeugenics and sought alternative ways of tackling social issues. There was a shiftin democratic states toward the adoption of collectivist solutions for social prob-lems and the ideology of egalitarianism rapidly spread across Europe. This com-bination of forces meant that eugenic theory could never dominate the socialwelfare and social policy debates as it did before the First World War. Paul andSpencer23 claim that politics ultimately changed the face of eugenics as geneti-cists in the late 1940s and 1950s tried actively to distance themselves from theclass- and race-based eugenics of the past. Eugenic ideas never fully disappeared,but ‘faced with the evidence of . . . barbarous policies, many who had once beentolerant of, if not impressed by, eugenic arguments rushed to condemn them’(p. 147).24

Old wine in new bottles?As medical genetics became more sophisticated and the complexities of inheri-tance became apparent, many geneticists, scientists and intellectuals who hadoriginally advocated the ideas behind the eugenics movements gradually beganto withdraw their support, and fewer and fewer people called themselves eugeni-cists. However, there was no major shift in research or motivation for researchand eugenic ideals were still evident as the science of medical genetics developedin the 1950s. Implicit in every research grant written for the study of a geneticdisorder was the suggestion that the disorder could be corrected or that the iden-tification of a ‘causative’ gene or genes would help in eliminating that diseasefrom the population.25

Since the 1960s, human genetics has progressed largely devoid of social preju-dices, returning to its scientific origins by drawing on a wide variety of disciples(e.g. statistics, demography, physiology and biochemistry) in an effort to makeuse of genetics solely for medical purposes. This shift in medical genetics wasapplied to health care by the advent of prenatal diagnosis and genetic counsellingin the late 1960s, the legalization of abortion in many countries, and the intro-duction of mandatory newborn screening programmes for metabolic disorders.26

Particularly important were discoveries relating to single-gene disorders, such asphenylketonuria and sickle cell anaemia, and the disclosure that Down’s syn-drome was the result of a chromosomal abnormality.

Kevles14 notes that the start of the shift from social eugenics to individualeugenics also occurred in the 1960s when the practices of genetic counsellingand genetic screening emerged. There was a subtle ideological shift in the sensethat there was a move from concern with abstractions like ‘the race’, ‘the popu-lation’ and ‘the gene pool’, to consideration of the genetic welfare of individualsand families.27 Although eugenics movements at the start of the century werecomposed of a disparate collection of individuals and groups, with sometimesvery different social, economic and political views, ‘all eugenicists, whetherradical, liberal, or conservative . . . believed that individual desires must besacrificed to the public good’ (p. 549).28 In the older tradition, actions or policieswere defined as eugenic if they furthered a social or a public purpose, suchas preventing people who were generally regarded as ‘genetically unfit’ from




reproducing. Similar actions and policies are not now viewed as eugenic if theyserve to promote choices for individuals and families, such as providing genetictesting for carrier status.29

Therefore, what was objectionable in the theory and practice of the old eugen-ics was not the goals (e.g. eliminating genetic disease (negative eugenics) orimproving the health of the human race (positive eugenics) ) but the meansemployed to achieve these ends, especially when those means were coercive.Holtzman defines eugenics as ‘any attempt to interfere with an individual’s pro-creative choices in order to attain a societal goal’ (p. 223).30 Proponents of the newgenetics claim that its distinctive feature is that it centres on voluntary requestsfrom individuals and families for genetic information in the absence of third partypressure. Thus, according to Holtzman’s definition, it is only coercive policies andpractices that can now be considered to be truly eugenic.28

In many cases there are no widely accepted yardsticks by which to judge howcoercive or not a policy actually is, or whether or not individuals or families aretruly free to make their own decisions and choices. Coercion means differentthings in different political and philosophical traditions, but there ‘is already gen-eral agreement that coercion is bad; the problem is a lack of agreement on whatcoercion is’ (p. 670).13 For example, eugenic policies in Singapore and China areperceived as coercive in the western world. The Chinese Maternal and InfantHealth Care Law, enacted on 1 June 1995, states that persons who are diagnosedwith a genetic disease of a serious nature are asked to take (unspecified) long-term contraceptive measures or to be sterilized (Article 10). Although this policyrepresents a different cultural ethic from that of most western countries, where itwould be seen as coercive, according to Chan31 it has been accepted with equa-nimity by the general public in China. Hesketh and Zhu claim that such dracon-ian policies are so readily accepted because of the overcrowding in many Chinesecities, the cramped living conditions, the pressures of child care with two work-ing parents, and the high costs of bringing up children (p. 1685).32

Coercion can be defined as something one is forced to do by a third party andwhich violates an individual’s rights. This might involve an enforced sterilizationor correspondingly, the denial of the right to be sterilized. However, althoughautonomy in respect of reproductive decision making is a widely held value, andone that most nurses would endeavour to protect, it can be superseded by othercompeting values in society. The denial of abortion in Ireland illustrates this pointwell because in that country both the mother and the fetus are accorded equalrights.33

It could be argued that birth control is eugenic or that any use of prenatal diag-nosis followed by abortion is also eugenic, if pressure is applied to avail of eitheroption. Currently, there are a whole range of health care practices that could beconsidered eugenic in that they eliminate genetic disease and improve the geneticload of the human race. Some of these include: selecting a marriage partner tooptimize a healthy birth (or using donated eggs or sperm); measures to improvethe living conditions or nutrition of pregnant women; vaccinations for rubella andother infections known to cause birth defects; financial incentives to donategametes; subtle pressures to terminate pregnancy during so-called nondirectivecounselling; the calculation of cost–benefit ratios in the delivery of health services;and the rationing of service provision for certain kinds of diseases. Some ques-

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tions for proponents of the new genetics include: are we practising eugenics everytime we recommend a genetic test, or when we encourage women to take folicacid to reduce their chance of having a baby with spina bifida, or even when wegive advice and information about maternal nutrition and pre- and postnatal care?All of these practices have the effect of reducing genetic disease or improving thehealth of newborn babies, but will they lead us down a slippery slope to theeugenic ideals experienced earlier in the twentieth century?

Today, some of the most common criticisms against genetic research are simi-lar to those that were directed at eugenics at the start of the twentieth century.Genetics, like eugenics, is viewed in some quarters as being inherently reduc-tionist and determinist.34 The old eugenics movement was predicated on a poorunderstanding of human heredity and human nature. Much of the failure of thismovement to sustain its ideals is also accounted for by its aspiration to presenteugenics as the overriding science of humankind. Early eugenicists simply didnot have the knowledge or the technology to carry out their proposals for theimprovement of the human race. Yet, some of the advances currently being madein genetics, such as gene therapy, mean that negative and positive eugenics poli-cies are more of a viable possibility now than in the early part of the twentiethcentury because the fixity of inheritance can no longer be presumed.

In the USA genetic factors are responsible for 30% of paediatric hospital admis-sions. They also contribute to birth defects in 4% of newborns and chronic dis-eases in 10% of adults.35 In the UK, 2–3% of couples are at high and recurrentrisk of bearing children with some form of inherited disorder.36 Furthermore, 5%of people in any western population will have some form of genetic disease orgenetically related disorder by the age of 25 years; this rises to 65% during a life-time if diseases with a strong genetic component are included (p. 1).37 Thus it islikely that most nurses will have some contact with individuals and families withgenetic or genetically related conditions at some stage during their career.

Lea and colleagues claim that genetics is moving into mainstream health care,and anticipate that nurses in all areas of practice will become involved in the pro-vision of information about genetic testing and assisting individuals and familiesin decision making and adjustment to new genetic information.38 According toForsman the nursing role in genetics is continually evolving.39 The basic elementsof case finding and referral, explaining genetic risk, constructing family pedigrees,assisting families in gathering documentation, genetic counselling and providinglong-term management assistance remain essentially the same. What is constantlychanging is the information that is available and the population to which thatinformation may be applied. For example, it has been argued that with earlygenetic testing, improved treatments and the potential for gene therapy, geneticdisorders such as cystic fibrosis, once thought to be fatal, are now considered aschronic conditions.40 Thus many such genetic diseases will be seen by nurses notonly in the paediatric intensive care unit, but in ambulatory paediatric and ado-lescent settings.





EducationOne might argue that it is incumbent upon us all to make responsible use of thewealth of information that is now resulting from advances in the new genetics.If reducing the incidence of genetic disease and improving the health of thehuman race are accepted as valid goals, then we must reflect on the kinds of prac-tices that we as health care professionals are prepared to engage in and the con-sequences that they will have for society. We must also reflect on the types ofgenetic interventions the general public wants and what they are prepared toaccept. One option involves creating a more accurate information base about thepublic’s health needs and desires for new genetic technologies, and acquiring abetter understanding of the values, beliefs and reasons behind the use or nonuseof genetic information.41 Another option is to involve the public more in decisionmaking about the new genetics42,43 but, perhaps most importantly, health careprofessionals need to consider how best to prepare for a future in which genet-ics is an integral part of medical and nursing practice.

However, it would appear that genetic issues have not even begun topermeate the consciousness of many health care professionals, and that nurses inparticular require more education and training to enable them to apply theirexpertise in this area.44,45 Anderson claims that despite the rapid advances ingenetics, only a few nurses are addressing the need for the widespread dissemi-nation of genetic information46 and to date only a small proportion of nurses havehad to address the knowledge and practice issues associated with geneticadvances.47 Unfortunately, genetics is still viewed as tangential to nursing, a use-ful but not a necessary component of nursing knowledge.48

Education and training in all aspects of genetics, inter alia, the history, science,ethics and social implications, is crucial for proactive professionals and impera-tive for the strategic delivery of appropriate information and services to individ-uals and their families. Loescher notes that oncology nurses in particular need tobe prepared. The need for genetic counselling will increase as more families withinherited cancer are identified, more cancer genes are isolated, and genetic testsbecome more easily available.49 It will be a challenge for nurses to remain up todate and knowledgeable, especially in rapidly evolving areas of genetics such asgene therapy, so that they can educate patients and families. Prows states thatnurses need to be advocates for genetic clients in the future.50

ConclusionAs we commence a new century, it is clear that we can no longer discuss orendeavour any form of health care without introducing a genetic prospect. Thepursuit of good genetic health has benefits for individuals, their families, com-munities and the societies of which they are part, and is an aim that is being pur-sued as a matter of priority by the Human Genome Project and in many countriesaround the world. The new genetics is creating additional knowledge that needsto be applied by all health care professionals in a culturally sensitive and holis-tically integrated way to reduce human pain and suffering. This article has arguedthat not only is an understanding of the science, ethics and social consequences

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of genetics important, but that an appreciation of the history of genetics and theeugenics movement is also crucial.

In the future, nurses need to recognize the complexity of decision making asso-ciated with the new genetics and to understand the ways in which the originaleugenic ideals of ‘good birth’ and ‘well born’ are still prevalent today. They alsoneed to appreciate that the original intentions behind both negative and positiveeugenic measures (i.e. the minimization of disease and improving the health ofthe human race) are still valid. Nurses will have an active role to play in pro-moting good genetic health and striking the appropriate balance between pro-tecting individual rights and pursuing the common good in their everydaypractice.

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eugenics and its relevance to contemporary health care

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