The range of congenital conditions identifiable prenatally has expanded as tests have become more sophisticated. They include chromosomal disorders (such as Down’s syndrome), single gene disorders (such as cystic fibrosis), and structural malformations. The last type of disorder is the most common and the least understood of genetic diseases and includes talipes (club foot), cleft lip, cleft palate, congenital heart defects, and neural tube defects.¹ This list seems set to increase in the face of rapidly advancing technology.

In 1999, screening tests for Down’s syndrome were offered to 70% of pregnant women who were identified as being at risk for foetal Down’s syndrome in the UK.² In 2001, this figure was 80%³ and the uptake rates were generally high, although no official figures exist. The uptake of screening looks set to increase even further. In a recent publication in the Lancet, Harris and colleagues concluded that “current guidelines should be changed to offer testing to all pregnant women, not just those whose risk of carrying an affected foetus exceeds a specific threshold”.⁴ This sentiment has been echoed by the National Centre for Clinical Excellence (NICE) who, in their guidelines for the NHS on the care of pregnant women, recommended that all women should be offered a test for Down’s syndrome, whatever their age.² These trends are not just isolated to Down’s syndrome. In a similar study it is asserted that screening all pregnant women for fragile X could be cost effective⁵ and the Advisory Committee on Genetic Testing (ACGT) have suggested that screening tests for all serious genetic conditions should be offered to all pregnant women.⁶

According to current guidelines, those subsequently categorised as being at high risk of having a baby with a disability are offered diagnostic testing. This involves sampling foetal tissue for analysis in the laboratory using techniques such as amniocentesis, chorionic villus sampling (CVS), and foetal blood sampling. Although these tests may confirm a diagnosis they are not without risks, being associated with procedure related miscarriage rates of 0.5–1% for amniocentesis and 1–3% for CVS and foetal blood sampling.⁷ The study by Harris et al presents preference data from a sample of 534 sociodemographically diverse pregnant women in the San Francisco Bay area, for whom procedure related miscarriage was considered preferable to having a baby with chromosomal abnormalities⁸ and as a consequence the offer to test high risk women is usually accepted.

If the prenatal test is positive, the possible outcomes are the continuation (usually with proposed treatment of the foetus in utero or of the neonate) or termination of the pregnancy. Although knowledge of congenital diseases has proliferated rapidly in recent years, treatment options are still limited and even when treatment is possible the emphasis has been on prevention of the birth of an affected child rather than cure. Again, no official data exist but Mark Evans, a Professor of Obstetrics and Gynecology in the United States has said that “most couples whose results show their child would have a serious chromosomal defect choose to terminate the pregnancy”⁹ and Dr Peter Brocklehurst, director of the National Perinatal Epidemiology Unit and leader of the NICE group behind the new guidelines, has acknowledged that offering prenatal tests for Down’s syndrome to all pregnant women will result in an increased detection rate and an increase in the termination of pregnancy for Down’s syndrome.¹⁰ In the absence of additional evidence, I wish to suggest that this trend would be no different for other conditions diagnosed in the womb.

There is therefore a growing trend in obstetric medicine of prenatal diagnosis and the selective abortion of foetuses that are likely to be born with a disability. As a result, between 1982/3 and 1992, the number of babies born with cleft lip fell by 43% and the number of babies born with club foot fell by 64%, even though both cleft lip and club foot are rectifiable surgically.¹¹ In the absence of any other significant interventions, these figures strongly suggest a trend towards selective abortion in response to potential disability.

THE DISABILITY CRITIQUE

These trends in prenatal medicine are often criticised, most notably by the disability rights movement, and most coherently as part of the “expressivist argument”. Marsha Saxton summarises this argument in the following, rather emotive, way: “the message at the heart of widespread selective abortion on the basis of prenatal diagnosis is the greatest insult: some of us are too flawed in our very DNA to exist; we are unworthy of being born…”.¹² The critique, as it is usually presented, distinguishes between those interventions that prevent a person with a disability from coming into existence (which devalues disabled people, with consequent psychological harm) and curing a disability in a person who already exists (which devalues the disability).

The argument usually proceeds from two premises. Firstly, to have a club foot (for example) is worse than to not have a club foot. Disability is not a neutral trait. This being true, then, it is as acceptable to surgically correct a club foot as it is to prevent disability in a developing foetus by living a particular lifestyle (not smoking, for example), taking specified medications, or refraining from taking others. This is not seen to devalue persons with disabilities. Many people in the disabled community support research into somatic cell gene therapy, for example, because of the prospect of alleviation of the harm inflicted by their disability. Indeed, Tom Shakespeare, a distinguished academic with a disability has been criticised by disability activists for removing hope from people with inherited disabilities who eagerly await treatments for their conditions because he adamantly opposes developments in genetics.¹³

The second premise is that a foetus has the potential to occupy full personhood. This position lies between the extremes of the conservative attitude towards abortion as murder and the liberal position that abortion is morally innocuous. From this starting point we can see that “there is no point in development, regardless of how early, when the embryo or foetus fails to display the potential for personhood”.¹⁴ Thus, the foetus has a moral claim to life from the moment of its conception that becomes larger as development proceeds until it is afforded a full right to life at birth. If a disability is diagnosed in utero, the foetus has the potential to develop into a person with that disability, and as such a termination of that pregnancy devalues people with that disability. Although many disabled people would welcome a cure for their disability, most would not welcome non-existence as an alternative to it.

Of course, there are conditions and circumstances where termination is considered by many in the disability rights movement to be an acceptable decision. The disability critique of prenatal diagnosis and selective termination is not anti-abortion but campaigns for consideration to be given to what is and what it is not appropriate to test for, given that diagnostic techniques are constantly improving. However, the aim here is not to present a philosophical critique of prenatal diagnosis and selective abortion, but to describe some of the reasons commonly given for its growth as a medical technology, and to propose for further study a reason less commonly given; in particular, this paper will suggest that cultural anthropological factors have played an important part.

First though, what other reasons and justifications have been given to support the increasing use of these technologies? Bailey looks to the political climate around the time of the introduction of prenatal diagnostic technologies (tests for Down’s syndrome, for example, have been available since the early 1970s) to explain their appeal.¹⁵ Preventive measures, she says, became a priority due to increased spending on healthcare at a time of economic recession yielding little improvement in the health of the population. Thus, it appears as though prenatal genetic screening and testing programmes were initiated, in part, because of their cost effectiveness. There are numerous examples of the costs of prenatal genetic testing being compared to the expense of caring for a person with a disability that could be avoided by terminating the foetus in utero, the most recent being Harris and colleagues’ cost utility analysis of CVS and amniocentesis versus no invasive testing.⁴ They report that “amniocentesis costs less than US $15,000 per quality-adjusted life year (QALY) gained for women” compared to the commonly used $50,000 per QALY gained threshold. The costs they incorporated into the equation included the cost of diagnostic testing, the cost of delivery, the future healthcare costs for the pregnant women, and the subsequent costs associated with raising a child affected by Down’s syndrome or another trisomy.

The perceived disruption of families caused by the addition of a child with a disability has been given as another justification for prenatal diagnosis and selective abortion.¹⁶ Families in which a child has a disability are often presumed to be dysfunctional, and it is assumed that many marriages break up under the strain. It has also been suggested that a poor quality of life is inevitable for people with disabilities and that aborting foetuses that are likely to be born with a disability is therefore a kind of altruism.¹⁶ This is exemplified by medical research that correlates quality of life with the degree of physical disability.¹⁵

This paper reflects upon another possible reason for these trends. It is asserted that they are, in part, a consequence of our attitudes towards disability, founded in what has been referred to as a “cult of physical perfection”.¹⁷ Aesthetic concern may be another facet of the whole justification for the increasing use of these technologies, sitting alongside those already discussed, or it may supersede them, given their well documented criticisms (see Asch and Parens for a good synopsis¹⁸). Whatever the true justification, while the attitudes towards disability that these technologies espouse have been widely commented upon, few commentators have explicitly referred to their cultural backdrop. This paper therefore seeks to describe the origins of this “cult of physical perfection” and puts forward the hypothesis that the increasing use of prenatal diagnosis and selective abortion is a consequence of it.

A BIOCULTURAL MODEL

Disability, by definition, forecloses certain opportunities regardless of social circumstances, but the problems associated with this are exacerbated by social factors. Biology and society interact to shape the experience of disability. It is also true to say that society shapes the perceptions and attitudes of the non-disabled towards people with disabilities; for example, would the non-disabled population react the same to people with disabilities without their frequent portrayal in the media by charities and aid organisations? It therefore seems reasonable to suggest that the same influences have played a part in the medicalisation of prenatal care. This suggestion will be explored further later.

Contemporary Western society is said to be postmodern. This is a term that is fashionable yet equivocal. It is an expression that has been overused and is the subject of a good deal of debate and scepticism. However, it still has utility. The prefix “post” implies something that went before and perhaps the easiest way to understand postmodern society is to briefly describe whence it came and what it is not.

MODERN SOCIETY

The start of the modern period is generally thought to correspond with the beginning of the European Enlightenment in the mid-eighteenth century.¹⁹ The Enlightenment was an intellectual movement guided by reason, objectivity, and rationality; indeed, Kant’s motto of enlightenment was “have courage to use your own reason”.²⁰ Klages describes how the basic idea of the Enlightenment was that the knowledge produced by science was “truth” and that this would always lead towards progress and perfection.¹⁹ She goes on, “reason is the ultimate judge of what is true, and therefore of what is right, and what is good (what is legal and what is ethical). Freedom consists of obedience to the laws that conform to the knowledge discovered by reason”.

These ideas are synonymous with the ideas of modernity, the political, philosophical, and ethical ideas characteristic of modern society. If we relate these to disability studies, we find that the predilection for “what is true, what is right, and what is reasonable” led to a society that categorised people or groups of people, creating binary distinctions between normal and “abnormal”.¹⁹ As scientific knowledge was seen as the ultimate form of truth, the medical profession was given the authority and power to classify people and as a result people with disabilities became marginalised and institutionalised.²¹ This resulted in intolerance, heterophobia, and the rejection of anyone defined as “other”, the antithesis of rationality and order;²² anyone non-white, non-male, and non-heterosexual.¹⁹ We should add to this list non-able. Anthropoemic (exclusionary) strategies that segregated people with disabilities were a policy response that characterised modernity, argues Hughes,²³ in what he refers to elsewhere as “a culture of forgetfulness, exclusion and confinement”.²²

POSTMODERN SOCIETY

The transition from modern to postmodern society was gradual, beginning around the mid-twentieth century, and was probably different in each discipline. Postmodern society is multifaceted and it is this miscellany of features that has both helped and hindered people with disabilities. As Hughes explains, “the post-modern promise is profoundly contingent, posing threats and offering opportunities for the movement of disabled people”.²² Before looking at the threats posed to people with disabilities, let us look at the opportunities inherent in postmodern society.

Postmodern society and disability rights

Postmodernism describes the aesthetic movement in the arts, architecture, and literature (as opposed to postmodernity which describes ethical and political ideals)¹⁹ and may be used to elucidate the postmodern inclination towards prenatal diagnosis and selective abortion that has been described. In art, modernism describes a succession of avant garde styles that dominated Western society from the late nineteenth up until the mid-twentieth century, culminating in abstract expressionism and work from artists including Jackson Pollock and Mark Rothko (fig 1). Although content was of relevance it was subordinated to pure form and technique. The emphasis was on how seeing takes place, rather than on what is perceived,¹⁹ and as such, abstract expressionism, and other modernist styles, were intellectual schools of art with a narrow focus. This is evident in Rothko’s Untitled (1968), the work of an artist whom Edward Lucie-Smith describes as “an artist of real brilliance imprisoned in a straight jacket”.²⁴

Perhaps the first artist to challenge modernist styles was Marcel Duchamp. He was part of the Dadaist movement (1916–24), a nihilistic movement that focused on surface rather than on the serious, intellectual concepts inherent in modernism. He is best remembered for his “ready-mades”, the most famous example being his Fountain (fig 2).

Duchamp rejected modern boundaries between what constituted art and what did not. Similarly, postmodernity has retreated from the modern bedrock of objectivity and the dichotomy of normality and abnormality. Postmodern society denies that medical knowledge is the ultimate truth, or indeed that there is any objective standard of truth, but instead acknowledges a plurality of truths. The distinction between normality and abnormality is blurred because postmodernity recognises a plurality of individual subjects; it sees society as fragmented and individualistic rather than as governed by a totalising philosophy (what Jean-Francois Lyotard described as “grand-narratives”²⁵). This is evidenced in the way we have witnessed minority groups assert their identities and in the increasing momentum of the anti-racism, women’s rights, and disability rights movements: “In modernity, disabled people were one of the groups who symbolised contingency and uncertainty. Now that contingency and uncertainty are fast becoming a way of life … those who have been victimised by the quest for ‘civilised’ order have begun to exploit the opportunity to assert their identities and to celebrate the very attributes that, in modernity, had made them strangers”.²²

However, postmodernity also poses threats to people with disabilities. Synonymous with the rejection of the modern partiality for objective scientific knowledge as the ultimate form of truth was the rise of autonomy as an important principle in medical ethics. Modern medicine was criticised as paternalistic and patient self-determination came to the fore. Thus, while people with disabilities have begun to assert their identities in the postmodern era, the acceptance of heterogeneity has been limited because the much larger non-disabled population were granted a right of self determination with regard to decision making in pregnancy. This decision making has tended to reflect the “cult of physical perfection” and prenatal diagnostic technologies are thriving as a result. This is another facet of postmodernity, which may be explained by an examination of the work of Andy Warhol and Richard Hamilton.

Postmodern society and prenatal diagnosis

Warhol began his career as a commercial artist, moving into painting when pop art emerged as a movement in the 1960s.²⁶ Like Dadaism, pop art challenged the definition and traditional values of art. It was characterised by images reproduced from comic books and advertisements that eroded any distinction between the original and the copy.²⁶ Warhol’s most famous pieces, for instance, include large scale Campbell’s soup cans and a Coke bottle. Consider Warhol’s Twenty Marilyns (fig 3), a 1953 Hollywood publicity photo printed three times. Twenty Marilyns is wholly superficial and takes advantage of the postmodern predilection for mass produced commercial images.²⁶ Warhol was opposed to the concept of a work of art as a piece of craftsmanship, and produced his work like a manufacturer, calling his studio “The Factory”.

Similarly, Richard Hamilton used borrowed imagery in his 1956 collage depicting models with modern appliances and mass produced household items (fig 4). He is reported as saying that the qualities he was looking for in his art were “popularity, transience, expendability, wit, sexiness, gimmickry, and glamour”,²⁴ all the hallmarks of postmodern society.

Postmodern society, like the work of Andy Warhol and Richard Hamilton, is dominated by mass marketed images. Representations of the “perfect body”, glossy commercial photographs and television pictures of models and film stars saturate our society. Just like Warhol’s Twenty Marilyns, postmodern bodies have become objects of vision.²⁶ Hughes refers to our “ocularcentric” culture,²² and this has an inevitable impact on people with disabilities who are judged by their aesthetic value. Indeed, Synnott argues that “aesthetic stratification” might even be more pervasive than class, gender, or ethnic inequalities.²⁷

It has been suggested that one result of the postmodern penchant for visual flawlessness is an increase in conditions such as anorexia and bulimia (anorexia has been described by Lowe as a “late-capitalist sociopathology”²⁸). Another is the rise of interventions designed to eliminate imperfection (indeed, “Say no to imperfection” is the tag line of one cosmetics firm’s adverts!). Our consumer society offers us a startling range of “normalising” products and services for “every bodily burden, blemish, bulge or imperfection”.²¹ Adverts for cosmetic surgery, wrinkle treatments, and the perfect figure are unavoidable in the popular media. The acceptable way to deal with imperfection has become to purchase something to eradicate it.²⁶ Medicine has contributed to this process, prostheses and cosmetic surgery being just two examples.²¹ Another is the increasing use of technologies designed to diagnose foetal abnormalities in utero.

So, whereas modern culture advocated what sociologist Zygmunt Bauman called anthropoemic strategies of segregation, postmodern culture is preoccupied with anthropophagic (or assimilationist) strategies.²³ That is to say, while modernity created institutions to hide disabled people from public view, postmodernity prefers to “normalise” them. The idea of physical perfection has not of course been peculiar to modernity. It is also seen in Greek statutory and Platonic ideals, Renaissance revivals of ideas of beauty, and in many other epochs throughout history as much as by contemporary fashion and the cult of youth. I have, however, proposed as a hypothesis that warrants further investigation, that the immanent influences that postmodernity has on contemporary society inevitably affect medical practice in general and policies on prenatal diagnosis in particular.

CONCLUSIONS

In Western medicine there is a clear trend towards increased prenatal screening, testing, and the selective abortion of foetuses that are likely to be born with a disability.¹³ The medicalisation of prenatal care can tend to obscure the role of our cultural susceptibilities in framing the use of these technologies, and their implications. Although many reasons for the increasing uptake of prenatal diagnosis and selective abortion have been postulated, I propose that through a lens forged in postmodern society we may see these new obstetric technologies as one method of “aesthetic normalisation”, aimed at satisfying the postmodern predilection for faultlessness. This hypothesis requires testing with a qualitative study of parental attitudes in reproductive decision making, but if proved correct, it poses a new challenge to people with disabilities in a society where, on many levels, difference and the “other” are generally becoming more accepted. The medical community would need to acknowledge the influence of the “cultural turn” on disabled groups, and both adapt to the challenges and resolve the tensions between the opportunities and the threats inherent in postmodern society to ensure that new technologies fulfil all their potential for good.