The Eugenics of Normalcy
The Politics of Gene Research

by Ruth Hubbard and Elijah Wald with Nicholas Hildyard

first published 1 September 1993


Molecular biologists now claim that they can link specific DNA sequences to specific diseases, forms of human behaviour and social conditions -- from diabetes and cystic fibrosis to homosexuality, alcoholism, intelligence and even homelessness. Further, by mapping “the human genome”, they hope to reveal “what it is to be human”. Although based on flawed science, such claims are being used to divert attention from environmental factors in disease and to legitimize new forms of intervention in social life. The myth of the “all powerful gene” threatens to impose a new eugenics -- with “normality” defined by arbitrary models of a standard human.



Molecular biologists now claim that they can link specific DNA sequences to specific diseases, forms of human behaviour and social conditions -- from diabetes and cystic fibrosis to homosexuality, alcoholism, intelligence and even homelessness. Further, by mapping "the human genome", they hope to reveal "what it is to be human". Although based on flawed science, such claims are being used to divert attention from environmental factors in disease and to legitimize new forms of intervention in social life. The myth of the "all powerful gene" threatens to impose a new eugenics -- with "normality" defined by arbitrary models of a standard human.

Few people can have missed the growing flood of gene stories in the popular press. Within the last few years, genes have been announced "for" manic depression, schizophrenia, alcoholism and smoking-related lung cancer. These supposed identifications are invariably obtained with small samples of people, and much publicity accompanies every such "discovery". Like mirages, many of these genes disappear when one tries to look at them closely -- the claims about manic depression and schizophrenia genes were withdrawn soon after their announcement and the gene for alcoholism has met a similar fate. However, there are so many gene stories that people are left with the impression that our genes control everything.

Indeed, a new industry is rapidly being built on hopes of "better living through genetics". Evoking images of the quest for the Holy Grail, molecular biologists -- the scientists who study the structure and function of genes and DNA (see Box, p.186) -- have embarked on a project to map and sequence "the human genome". With a budget of $3 billion over the next fifteen years, the Human Genome Project has been described as "the most astonishing adventure of our time" and "today's most important scientific undertaking". Supporters claim that the project promises to reveal "what it is to be human" and to "illuminate the determinants of human disease" -- even those diseases "that are at the root of many current societal problems".1

The Hypothetical Human

This is reductionism at its most extreme: not only are such claims based on a flawed view of genes being "all powerful" in determining human disease and behaviour but, far from revealing "what it is to be human", the genome project and similar programmes will reduce the essence of humanity to a hypothetical sequence of sub-miscroscopic pieces of DNA molecules. As Richard Lewontin, Professor of Zoology at Harvard University, comments:

"While the talk is of sequencing the human genome, every human differs from every other. The DNA I got from my mother differs by about one tenth of one per cent from the DNA I got from my father, and I differ by about that much from any other human being. The final catalogue of "the" human DNA sequence will be a mosaic of some hypothetical average person corresponding to no one."2

By magnifying the mythic importance our culture assigns to heredity -- and by increasingly appropriating the right to define what is "normal" in human biology and behaviour -- molecular biologists threaten to impose a new eugenics upon society.

Box 1: What are Genes?

Biologists agree that genes are functional segments of deoxyribonucleic acid (DNA), the molecule in chromosomes that specifies the composition of the various proteins that occur in organisms. Specific genes -- or more accurately, specific functional segments of DNA -- may affect whether and at what rate a particular protein, as well as the proteins specified by other nearby genes, are synthesized.

DNA is composed of two ribbons consisting of alternating sugar and phosphate molecules wound into a double helix. The ribbons are connected by rungs which are formed by two bases, one attached to each ribbon. There are four kinds of bases in DNA: adenine (A), thymine (T), cytosine (C) and guanine (G). On any one strand of the double helix, the four kinds of bases can occur in any sequence, but their shapes are such that, in order to fit together into rungs, every A on one strand must lie opposite a T on the other strand, and every C must lie opposite a G. So,if a segment of DNA on one strand has the sequence of units CAAATTGC, the corresponding sequence on its partner strand would be GTTTAACG. The ostensible purpose of the Human Genome Project is to map and determine the base sequences of all the functional DNA sequences within "the" human genome.

When speaking about how DNA functions, molecular biologists, as well as the media, tend to say it "controls", "programmes" or "determines" traits. These verbs are all inappropriate because they assign far too active a role to DNA, conveying the impression that segments of DNA are absolute predictors. Rather, although its contribution is important, a functional DNA sequence is simply one of the components that participate in engendering a particular trait. It is easy shorthand to call such sequences "genes".

Heredity and Environment

People have long argued about what is most significant: heredity or environment. Belief in the power of heredity was strong at the beginning of this century. Genetics was becoming a discipline in its own right, and scientists hoped it would solve a wide range of problems. However, hereditarian ideas went underground after the Nazis' racist, eugenic policies became widely known: such policies stand as a horrific warning of the dangers of assigning too much power to biological inheritance.

Since the early 1970s, the pendulum has been swinging back, and scientists are again emphasizing the importance of heredity in shaping our character and actions. This shift is due in part to a conservative backlash against the gains of the civil rights and women's movements. These and similar movements have emphasized the importance of our environment in shaping who we are, insisting (in the US) that women, African Americans and other kinds of people have an inferior status in American society because of prejudices against them, not because of any natural inferiority. Conservatives are quick to hail scientific discoveries that seem to show innate differences which they can use to explain the current social order.

By exaggerating the importance of genes, hereditarians try to find simple answers to complicated questions. But the interactions and transformations that go on inside us, and between us and our environment, are too complex to be forced into simplistic patterns. Our environment is full of other living organisms, from the bacteria that colonize our intestines and supply us with essential vitamins and other foodstuffs, to the human beings and other animals with whom we live. Looking at all our genes, or even at all the genes of all these creatures, would still not tell us very much about "human nature" or our interrelationships in societies and in nature.

Fallacies of Genetic Predictions

The assumption that there is a relatively straightforward relationship between genes and traits is critical to the new orthodoxy, providing the theoretical underpinning for programmes such as the Human Genome Project and for the increasing use of techniques such as genetic screening. It is, however, highly misleading.

Firstly, inherited conditions -- one's eye colour, for example -- involve an extremely complex interplay of many factors and processes, and cannot be reduced to single genes acting alone. As Abby Lippman, Professor of Epidemiology at McGill University, and Philip L. Bereano, a political scientist, comment: "Most of us learned the significance of genetic information through high-school lessons about Mendel's experiments with tall and short pea plants. But we may have forgotten that a pea plant with tall genes that receives inadequate sunlight, water or nutrients will be short."3

Secondly, as Richard Lewontin points out, the problem of establishing direct causality between specific genes and specific traits is complicated still further by the fact that "messages" carried by specific DNA sequences vary in different contexts, just as words have different meanings in different contexts. Lewontin uses an analogy with the many meanings of the word "do". Thus:

"No word in English has more powerful implications of action than "do". "Do it now!" Yet in most of its contexts, "do" as in "I do not know" is periphrastic, and has no meaning at all. While the periphrastic "do" has no meaning, it undoubtedly has a linguistic function as a place holder and spacing element in the arrangement of a sentence ... So elements in the genetic message may have meaning, or they may be periphrastic. The [DNA] sequence 'GTAAGT' is sometimes read by the cell as an instruction to insert the amino acids valine and serine in a protein, but sometimes it signals a place where the cell machinery is to cut up and edit the message; and sometimes it may be only a spacer ... that keeps other parts of the message at an appropriate distance from each other. Unfortunately, we do not know how the cell decides among the possible interpretations."4

Thirdly, even genes that are implicated in conditions whose inheritance follows a regular and predictable pattern are proving to be far from simple to define and localize. Identification of the "cystic fibrosis gene" and its localization on chromosome 7 has turned up many different base changes (see Box) that are associated with this condition in different individuals, rather than a single base change or mutation, as expected. In fact, cystic fibrosis probably is not a single entity, but a group of related conditions with somewhat different manifestations that result from different mutations in the DNA sequence.5 The gene associated with Huntington disease on chromosome 4 has turned out to involve an altogether unanticipated type of mutation, in which short base sequences, such as Lewontin refers to, are repeated many times. In the case of Huntington disease, the repeats involve the insertion of variable numbers of "CAG" units within the gene associated with the synthesis of an as yet unidentified protein with unknown functions. Currently, increasing numbers of mutations are being attributed to such expanded strings of repeats. How many of the interpretations will survive the test of further experiments remains to be seen.

Genetic Red Herrings

Despite the complexities revealed by current research, molecular biologists have been increasingly successful in persuading society at large that ill health should, and can, be viewed primarily as a genetic problem. One result is that, by focusing attention on what is happening inside us, attention has been distracted from environmental and social factors that need to be addressed.

Consider the search for a "gene for diabetes". Diabetes is a disturbance of carbohydrate metabolism, characterized by unusually high concentrations of the sugar glucose in the blood. Medical scientists recognize two forms of diabetes, Type 1 and Type 2. Type 1 diabetes usually appears during adolescence, though it can start earlier or later, and it begins quite suddenly. By contrast, Type 2 diabetes tends to come on gradually and not until people have passed their middle years.

The metabolic patterns underlying the two forms of diabetes are quite different. Type 1 diabetes results from the destruction of cells in the pancreas that normally produce insulin, a hormone involved in glucose metabolism. Type 1 diabetes is thought to involve the immune system and be the result of an allergic response to toxic chemicals in the environment, a viral infection, or some other unidentified stimulus.

By contrast, people with Type 2 diabetes secrete normal or above-normal amounts of insulin, but their tissues develop an insensitivity to it. Therefore the insulin loses its metabolic effectiveness. Type 2 diabetes, which is by far the more common of the two forms, can often be alleviated by a diet low in carbohydrates and fats, especially when coupled with moderate levels of exercise. Indeed a study of nearly 6,000 middle-aged men, published in the New England Journal of Medicine, showed that regular exercise, such as jogging, bicycling and swimming, markedly reduced the incidence of Type 2 diabetes.6 While this does not rule out the possibility that Type 2 diabetes has a genetic component, other factors clearly play an important role.

Molecular biologists believe that several proteins are involved in the development of Type 2 diabetes and the hunt is currently on to locate, identify and analyse the genes that specify the amino acid sequences of insulin and an "insulin receptor". Once enough is known about the structure and location of these two genes, scientists will be able to develop tests to detect differences in their base sequences. Such tests could then be used to predict a "predisposition" to develop Type 2 diabetes in healthy people who are members of families in which the condition occurs.

All of this research is being done in the hope of finding a predictive test for a "predisposition" to develop a condition that many people could avoid by changing their diets and getting regular exercise. It would surely be better to educate everyone about the importance of diet and exercise and to work towards providing the economic and social conditions that could enable more people to live healthily, rather than spending time and money to try and find "aberrant" genes and to identify individuals whose genetic constitution may (but then again, may not) put them at special risk.

The susceptibility to Type 1 diabetes appears to cluster in families and in specific populations, for example, among people of northern European origin. If one child in a family has Type 1 diabetes, the probability of a sibling developing it is about 6 per cent, or twenty times the rate for the general population. While this might seem to indicate a genetic component, it turns out that an identical twin of someone who develops Type 1 diabetes has only a 36 per cent probability of developing the condition.7 This is higher than the probability for ordinary siblings, but proves that genes cannot be the sole determining factor. Indeed, since toxic environmental agents and viral infections are thought to provoke Type 1 diabetes, family correlations need not point to a genetic origin. Siblings who live together are often exposed to the same environmental agents.

Nonetheless, molecular biologists are trying to develop predictive genetic tests for this condition. This time they are not looking at the "insulin gene" but at genes that participate in the synthesis of proteins active in immune reactions. Whatever they find, we can be sure that predictive diagnoses will be tentative at best, both because of the complexities of the immune system and because no one knows what factors trigger this particular immune response. We can also be sure that the test will do nothing to reduce exposure to the toxic chemicals that have been linked to the condition.

From Flawed Science to Social Stigmatizing

If the myth of the "all-powerful gene" is already deflecting attention from the social and environmental causes of disease, it also threatens new forms of social discrimination. Indeed, as Richard Lewontin has argued, the importance of genetic research projects such as the Human Genome Project:

"lies less in what it may, in fact, reveal about biology, and whether it may in the end lead to a successful therapeutic programme for one or another illness, than in its validation and reinforcement of biological determinism as an explanation of all social and individual variation. The medical model that begins, for example, with a genetic explanation of the extensive and irreversible degeneration of the central nervous system characteristic of Huntington's chorea, may end with an explanation of human intelligence, of how much people drink, how intolerable they find the social condition of their lives, whom they chose as sexual partners, and whether they get sick on the job. A medical model of all human variation makes a medical model of normality, including social normality, and dictates a therapeutic or pre-emptive attack on deviance."8

Questions about the genetic origins of homosexuality, for example, would be of little interest if it were not a stigmatized behaviour. We do not ask comparable questions about "normal" sexual preferences, such as preferences for certain physical types or for specific sexual acts that are common among heterosexuals. Indeed, the reason that the purported "discovery" of a "gay gene" (see Box) is big news is not that it is any more promising than previous "discoveries" of such genes have been, but that the debate on homosexual rights is topical.

Missed out of the debate entirely, however, is the extent to which sexual orientation is mediated by cultural and social factors. Among the wide range of possible human behaviours, societies select some that they approve of or extol, others that they accept or tolerate and yet others that they dislike, condemn and even persecute. These choices are part of the fabric that holds each society together.

All of us have a variety of erotic feelings. Societies define some of these as sexual and regulate the degree and the ways in which we are permitted to develop and express them. Homosexual behaviours probably have existed in all societies, but our current perception of homosexuality has its roots in the late 19th century. At that time, sexual activities were first used to define the people who engaged in them. Any sexual act that deviated from "the missionary position" could lead to its practitioner being stamped a "pervert". Masturbators, it was said, could be recognized on sight by their sallow and nervous appearance. Homosexuality stopped being what people did and became who they were. As the French philosopher Michel Foucault has written, "The sodomite had been a temporary aberration: the homosexual was now a species."9

This way of categorizing people obscured the accepted fact that many people do not have sexual relations exclusively in one way or with either sex. Turn-of-the-century sex reformers, such as Havelock Ellis, while understanding that the categories could blur, began viewing homosexuals as biologically different from heterosexuals. They argued that homosexuals should not be punished for their acts because their orientation was biological, not a matter of choice.

Many still believe that homosexuality would be more socially accepted if it were shown to be inborn. Gay journalist Randy Shilts has said that a biological explanation "would reduce being gay to something like being left-handed, which is in fact all that it is."

This argument is not very convincing. Until the latter half of this century, left-handed people were often forced to switch over and were punished if they continued to favour their "bad" hand. Grounding difference in biology does not stem bigotry. African-Americans, Jews, people with disabilities as well as homosexuals have been and still are persecuted for biological "flaws". The Nazis exterminated such people precisely to prevent them from "contaminating" the Aryan gene pool. Despite claims to the contrary, this attitude has not disappeared: London's Daily Mail reported the latest study in Science with the headline "Abortion Hope after 'Gay Genes' Findings."

Studies of human biology cannot explain the wide range of human behaviour. Such efforts fail to acknowledge that sexual attraction, for example, depends on personal experience and cultural values and that desire is too complex, varied and interesting to be reduced to genes. But the genetic research behind such studies can, and does, lead to dangerous and unwarranted conclusions being drawn that have profound social implications.

Box 2: Gay Genes: Flawed Science

Many modern researchers argue that because no single environmental explanation can account for the development of homosexuality, homosexuality must be genetically determined. But the failure to come up with a clear environmental explanation for a sexual preference is not surprising, and does not mean that the answer lies in biology. Nor, despite publicity to the contrary, have recent studies established a clear-cut genetic link.

A widely-publicized study, published in 1991, tried to determine the extent to which homosexuality is inherited by looking at a group of homosexual men (including some bisexuals) and their brothers. In this study, Michael Bailey and Richard Pillard, researchers at Northwestern University and the Boston University School of Medicine, found that the rate of homosexuality for the adoptive and non-twin biological brothers was about 10 per cent, a rate often attributed to the general population. The rate for the fraternal twins was 22 per cent, and for the identical twins it was 52 per cent.

The fact that fraternal twins of gay men were roughly twice as likely to be gay as other biological brothers shows that environmental factors are involved, since fraternal twins are no more similar biologically than are other biological brothers. If being a fraternal twin exerts an environmental influence, it does not seem surprising that this should be even truer for identical twins, who the world thinks of as "the same" and treats accordingly, and who often share those feelings of sameness.

Moreover, Bailley and Pillard did not simply study a random sample of homosexual men. The gay and bisexual men "were recruited through advertisements placed in gay publications". So all the respondents read gay periodicals and answered to advertisements asking them about their brothers. Although the advert asked gay men to call "regardless of the sexual orientation of [their] brother[s]", men with gay brothers might well have been more likely to participate than men with brothers who were not gay, especially if the brothers were homo--phobic or if the gay men were not "out" to their families. Despite these, and other flaws, and the fact that the authors acknoweldge them in their paper, Science News quotes them as saying: "Our research shows that male sexual orientation is substantially genetic."

More recently, researchers from the National Cancer Institute announced in July this year in Science magazine that they had found a set of genetic markers shared by 33 of the 40 pairs of homosexual brothers in their study. The implicit reasoning is that if brothers who have specific DNA sequences in common are both gay, these sequences can be considered genetic markers for homosexuality.

There are problems with this reasoning. Of the relatively small number of siblings in the survey, almost a quarter did not have these markers. Also the researchers did not do the obvious control experiment of checking for the presence of these markers among heterosexual brothers of the gay men they studied. It is surprising that the correlation found in this research warranted publication without these controls, especially in as influential a journal as Science.

Testing and Eugenics

Genetic research opens up new possibilities for reinforcing social control -- and for legitimizing that control. Helen Rodriguez-Trias, currently president of the American Public Health Association, cites a 1972 survey of obstretricians which found that "although only 6 per cent favoured sterilization for their private patients, 14 per cent favoured it for their welfare patients. For welfare mothers who had borne illegitimate children, 97 per cent ... favoured sterilization."10

This is classic eugenic thinking, but eugenics can appear in much subtler ways. Testing prospective parents to see if they are carriers of genetic "defects", for example, leads to labelling of large groups of people as "defective". Not only the people who manifest the condition but also the carriers are likely to be considered less than perfect. Such tests are often advertised as altogether helpful because they increase peoples' choices, but it would be a mistake to ignore the ideology that almost invariably accompanies their use.

In 1971, Bentley Glass, retiring as President of the American Association for the Advancement of Science, wrote:

"In a world where each pair must be limited, on the average, to two offspring and no more, the right that must become paramount is the right of every child to be born with a sound physical and mental constitution, based on a sound genotype. No parent will in that future time have a right to burden society with a malformed or mentally incompetent child."11

In a similar vein, the theologian Joseph Fletcher has written:

"We ought to recognize that children are often abused precontraceptively and prenatally -- not only by their mothers drinking alcohol, smoking and using drugs non-medically but also by their knowingly passing on or risking passing on genetic diseases."12

Notice that Fletcher absolves doctors of responsibility, singling out "non-medicinal" drug use. This language of "rights" of the unborn implicitly translates into obligations of future parents, and especially future mothers.

This logic becomes explicit in the writings of Margery Shaw, a lawyer and doctor. Reviewing what she calls "prenatal torts", she argues as follows:

"Once a pregnant woman has abandoned her right to abort and has decided to carry her fetus to term, she incurs a 'conditional prospective liability' for negligent acts towards the fetus if it should be born alive. These acts could be considered negligent fetal abuse resulting in an injured child. A decision to carry a genetically defective fetus to term would be an example ... Withholding of necessary prenatal care, improper nutrition, exposure to mutagens and teratogens, or even exposure to the mother's defective intrauterine environment caused by her genotype ... could all result in an injured infant who might claim that his right to be born physically and mentally sound had been invaded."13

Shaw not only assumes that a fetus has rights (a hotly debated assumption) but she places the burden of implementing those "rights" squarely on the shoulders of individual women. She does not suggest that women must have access to good nutrition, housing, education and employment so that they are able to secure a fetus its "right" to proper nutrition and avoid its being exposed to mutagens and teratogens. She only urges that "courts and legislatures take all reasonable steps to insure that fetuses destined to be born alive are not handicapped mentally and physically by the negligent acts or omissions of others." Her language of "rights" does not advocate the kinds of improvements that would benefit women and children. It is the language of eugenics and social control.

The Eugenics of Normalcy

But the language of eugenics has changed: no longer is there an appeal for overt social engineering through government edict -- rather the new technologies will allow eugenics to be accomplished with an illusion of "individual choice". In 1988, for example, the US Office of Technology Assessment published a report on the Human Genome Project.14 As Evelyn Fox Keller points out, the report "sets the projects's eugenic implications apart from earlier precedents by distinguishing a 'eugenics of normalcy'"; that is, "the use of genetic information ... to ensure that ... each individual has at least a modicum of normal genes." The report argues that "individuals have a paramount right to be born with a normal, adequate hereditary endowment." Fox Keller comments:

"The 1990s' version of the 'new eugenics' is no longer construed as a matter of social policy, the good of the species, or the quality of our collective gene pool; the current concern is the problem ... of the 'disease-causing genes' that 'some of us as individuals have inherited'. Accordingly, it is presented in terms of the choices that 'they as individuals' will have to make.

Genetics merely provides the information enabling the individual to realize an inalienable right to health, where 'health' is defined in reference to a tacit norm, signified by 'the human genome', and in contradistinction to a state of unhealth (or abnormality), indicated by an ever growing list of conditions characterized as 'genetic disease'."15

Inventing Disease

The development of tests to detect genes, or substances whose metabolism they affect, opens the door for the invention of an unlimited number of new disabilities and diseases. For any trait that has a normal distribution in the population, some people can be defined as having "too much" and others "not enough".

Pharmaceutical companies and doctors stand to make a good deal of money from inventing new diseases -- based on people not conforming to a "norm" -- as fast as new diagnostic tools are developed that can be used to spot or predict their occurrence. Thus, Genentech, one of the first generation of biotechnology firms, markets a genetically-engineered form of human growth hormone. This hormone previously could be obtained only in minute amounts, by isolating it from the pituitary glands of human cadavers. When the supply was limited, human growth hormone was only used to treat children with pituitary dwarfism, which results from the reduced secretion of this hormone by the pituitary gland. Once the hormone became available in quantity, doctors began to prescribe it to treat people who secrete normal amounts of growth hormone.

In one series of experiments, growth hormone was given to growing boys deemed "too short" for their age. A New York Times Magazine cover story on these experiments reports that Genentech scientists have suggested that it is proper to consider any child whose height falls within the lowest three per cent of the population as suitable for treatment.16

But it is in the nature of characteristics like height that, no matter what their average distribution may be, there will always be a lowest -- and highest -- 3, 5, or 10 per cent. Dr. John Lantos and his colleagues point out that "of the three million children born in the US annually, 90,000 will, by definition, be below the third percentile for height." Since this "treatment" is not without risks, there is no telling how the health of the children will be affected by daily injections of growth hormone. However, since growth hormone treatment costs about $20,000 a year per child, if each of these children received a five-year course of treatment, this would constitute a potential market of about $9 billion a year for Genentech.17

Researchers have also suggested that administering growth hormone to old people slows the aging process. A report on the use of synthetic human growth hormone for this purpose appeared in July 1990. The experiment involved twenty-one men aged between sixty-one and eighty-one years.18 Since all these men were healthy to begin with, the benefits of the treatment were measured by how far it brought a range of "symptoms" (from mass of fat tissue to skin thickness and bone density) into a more "youthful" range. In effect, the fact that human growth hormone can now be produced in quantity has opened the way for the medical establishment to turn the normal process of aging into a disease.

Genetic Discrimination

As genetic and other biologically based tests become part of the standard apparatus in hospitals, schools and other institutions, so their routine use "obscures the uncertainties inherent in [such] tests and [leaves] their underlying assumptions unquestioned."19

The current love affair with predictive tests for "learning disabilities" sets up the potential for discrimination in the future as well as the present. Norms create deviance, and an "abnormal result" on a biological or genetic test, though it may not blame the child, stigmatizes her or him and projects that stigma into the future.

Diagnostic labels can affect a child's self-image and his or her relationships in school and at home. They also become part of that child's "file", the growing body of data that follow her or him from school to school and job to job. Nelkin and Tancredi, two social scientists, put it this way:

"The use of diagnostic techniques has substantial social force beyond the educational context. The school system has contact with most children in the society, and is traditionally responsible for assessing, categorizing and channelling them toward future roles ... School professionals ... transmit their evaluations to other institutions to help identify who is genetically constituted to assume certain types of jobs. Thus, diagnostic technologies not only help schools meet their own internal needs, they also empower schools in their role as gatekeepers for the larger society."20

Nelkin and Tancredi suggest that genetic testing in the schools could become mandatory if enough people come to believe that a specific genetic condition affects behaviour or the ability to learn. This is especially likely if people can be persuaded that such new information will help relieve behavioural problems and so benefit the affected children and their classmates.

It is all too easy for genes to take on a life of their own. Genetic "learning disabilities" are a stigma not only for the child who has them but for all the relatives and descendants of that child. They can be used to show why poor children do not do well in school and to explain why their families became poor in the first place, and will continue to be poor. The tests will serve as an explanation and an excuse, getting schools and society off the hook by placing the blame on the children's unchangeable genes.

Pre-selecting Workers

The dangers of genetic testing do not end there. In workplaces, genetic tests can be used to screen workers and to monitor them. One reason is to try to minimize health insurance claims by employees.

Another is that it is costly to keep workplaces uncontaminated by toxic chemicals used in the manufacturing process, and to take the various safety precautions that may be necessary to preserve workers' health and well-being. Employers therefore find it easier to use tests that promise to predict the future health of prospective employees, in order to weed out job applicants who might be unusually sensitive to hazards in the workplace. Already, employers have embraced the concept of genetic "hyper-susceptibility" to explain why some workers respond to lower levels of dusts or other contaminants than the "average worker" does.

Gene "Therapy"

For advocates of the Human Genome Project, the concepts of "genetic disease" and "genetic testing" and "screening" are critical, because their vision of treatment includes "gene therapy". So-called somatic gene therapy is currently being tested in the US. A few children who have a rare, inherited form of immune deficiency are having DNA introduced into their lymphocytes (a kind of white blood cell) in order to mediate the synthesis of an enzyme these children lack. Also, people with cystic fibrosis are having a "normal" copy of the relevant DNA sequence administered by means of an inhaler in the hope that it will help to repair the protein lesion in the cells lining their lungs.

Attempts at germ-line gene manipulation would involve the use of very early embryos, produced in a dish by in vitro fertilization. When the fertilized egg has divided into six or eight cells, the scientists would remove one or two cells and test them to see whether the embryo has the mutations the scientists are trying to remedy. Because at this stage all of the cells are still equivalent, removing a couple of them does not damage the embryo. If the embryo has the suspected mutation, the scientists could try and correct it through gene manipulation, before inserting the embryo into the womb of the woman who will carry the pregnancy.

A genetic change introduced into an early embryo gets incorporated into all the tissues of the person into whom the embryo develops, and thus into his or her reproductive cells, the sperm or eggs. Therefore this change will be passed on to the future decendants of the manipulated embryo. To introduce changes into an individual's hereditary line goes way beyond what we ordinarily think of as a justifiable medical intervention. Yet, if the DNA of early embryos proves to be easier to manipulate than DNA in the differentiated tissues of children or adults, some scientists advocate manipulating this DNA. If attempts at somatic gene manipulation have been less successful than promised, germ-line manipulations can be touted as a more effective way to get the same results, not for people with the conditions, but for their descendants. However, if somatic gene manipulations are successful in some cases, people may be persuaded that germ-line manipulations are a logical next step.

As Edward Berger, a biologist, and Bernard Gert, a philosopher, point out:

"Past experience has shown that exciting new technology, including medical technology, generates pressures for its use. Thus, it is quite likely that if germ-line gene therapy were allowed, it would be used inappropriately ... In the real world, researchers will overestimate their knowledge of the risks involved and hence will be tempted to perform germ-line therapy when it is not justified."21

Lest this sound unduly alarmist, here is a quotation from Daniel Koshland, a molecular biologist and editor-in-chief of Science magazine. Writing on the ethical questions posed by germ-line gene manipulations, Koshland muses about the possibility "that in the future, genetic therapy will help with certain types of IQ deficiencies." He asks: "If a child destined to have a permanently low IQ could be cured by replacing a gene, would anyone really argue against that?" (Note the use of the word "cured" for averting the "destiny" of a "child" who would, at the time of the "cure", be half a dozen cells in a petri dish). While voicing some misgivings, Koshland continues:

"It is a short step from that decision to improving a normal IQ. Is there an argument against making superior individuals? Not superior morally, and not superior philosophically, just superior in certain skills: better at computers, better as musicians, better physically. As society gets more complex, perhaps it must select for individuals more capable of coping with its complex problems."22

Clearly, the eugenic implications of this technology are enormous. It brings us into a Brave New World in which scientists, or other self-appointed arbiters of human excellence, would be able to decide which are "bad" genes and when to replace them with "good" ones. Furthermore, the question of whether to identify the functions of particular genes or to tamper with them will not be decided only -- or perhaps even primarily -- on scientific or ethical grounds, but also for political and economic reasons. We need to pay attention to the experiments that will be proposed for germ-line genetic manipulations, and to oppose the rationales that will be put forward to advance their implementation, whenever and wherever they are discussed.

Notes and References

1 US Congress, Office of Technology Assessment, Mapping Our Genes, Government Printing Office, Washington DC, 1988, p.84. Cited in Fox Keller, E., "Nature, Nuture and the Human Genome Project", in Kevles, D.J. and Hood, L., The Code of Codes, Harvard University Press, 1993, p.281.

2 Lewontin, R.C., Biology as Ideology, Harper Perennial, New York, 1993, p.68. Essay originally printed in The New York Review of Books, 28 May, 1992.

3 Lippman, A. and Bereano, P.L., "Genetic Engineering: Cause for Caution", The Globe and Mail, 25 June, 1993.

4 Lewontin, R., op. cit. 2, pp.66-67.

5 Barinaga, M., "Novel Function Discovered for the Cystic Fibrosis Gene", Science, Vol.256, 1992, pp.444-445.

6 Helmrich, S.P., Ragland, D.R., Leung, R.W. and Paffenbarger, R.S., "Physical Activity and Reduced Occurrence of Non-Insulin-Dependent Diabetes Mellitus", New England Journal of Medicine, Vol. 325, 1991, pp.147-152.

7 Todd, J.A. et al., "Genetic Analysis of Autoimmune Type 1 Diabetes Mellitus in Mice", Nature, Vol.351, 1991, pp.542-547.

8 Lewontin, R., op. cit. 2, p.65.

9 Foucault, M., The History of Sexuality, Vol.1: An Introduction, Vintage Books, New York, 1980, p.43.

10 Rodriguez-Trias, H., "Sterilization Abuse" in Hubbard, R., Henefin, M.S. and Fried, B. (eds.), Biological Woman -- The Convenient Myth, Schenkman, Massachusetts, 1982, p.149.

11 Glass, B., "Science: Endless Horizons or Golden Age?", Science, Vol. 171, 1971, pp.22-29.

12 Fletcher, J.F., "Knowledge, Risk and the Right to Reproduce: A Limiting Principle", in Milunsky, A. and Annas, G.J. (eds.), Genetics and the Law 2, Plenum, New York, 1980, pp.131-135.

13 Shaw, M.W., "The Potential Plaintiff: Preconception and Prenatal Torts", in Milunsky, A. and Annas, G.J. (eds.), op cit. 12.

14 US Congress, Office of Technology Assessment, op. cit. 1, p.84, cited in Fox Keller, op. cit. 1, p.295.

15 Fox Keller, op. cit. 1, p.295.

16 Worth, B., "How Short is too Short?", New York Times Magazine, 16 June 1991, pp.13-17, 28-29, 47.

17 Lantos, J., Siegler, M. and Cuttler, L., "Ethical Issues in Growth Hormone Therapy", Journal of the American Medical Association, Vol.261, pp.1020-1024.

18 Rudman, D. et al., "Effects of Human Growth Hormone in Men over 60 years old", New England Journal of Medicine, Vol.323, 1990, pp.1-6.

19 Nelkin, D. and Tancredi, L., "Classify and Control: Genetic Information in the Schools", American Journal of Law and Medicine, Vol. 17, 1991, p.67.

20 Ibid., p.73.

21 Berger, E.M. and Gert, B. M., "Genetic Disorders and the Ethical Status of Germ-line Gene Therapy", Journal of Medicine and Philosophy, Vol. 16, 1991, pp.667-683.

22 Koshland, D.E.,Jnr., "The Future of Biological Research: What is possible and what is ethical?", MBL Science, Vol. 3, 1988-89, pp.10-15.

End Note

Ruth Hubbard is Professor of Biology Emerita at Harvard University and serves on the Board of Directors of the Council for Responsible Genetics, 5 Upland Road, Cambridge, MA 02140, USA; Elijah Wald is a musician and freelance writer.

This article is drawn from Ruth Hubbard and Elijah Wald, Exploding the Gene Myth, Beacon Press, Boston, 1993.