Reproductive Genetics, Gender and the Body

Elizabeth Ettorre

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781134612604
• Edition: 1
• Topic: Medicina
• Subtopic: Teoría, práctica y referencia médicas

The new reproductive technologies are currently 'hot' topics in medical sociology Our book explores the complexities of genetic technologies with special reference to biomedical prenatal practices It includes material from interviews with doctors, lawyers and midwives in Greece, The Netherlands, Finland and England It is written by a leading figure in the field from a feminist perspective

1 Prenatal politics and ‘normal patient families’

The invention of the telescope, of techniques used for the cooking, canning, bottling or preserving of the apple or of medicaments to alleviate the stomach pains we will get if we eat too many of them, are seen as technologies – they do not add to our understanding of the working of the laws of nature, but they add to our control over the world around us.

Hilary Rose and Steven Rose, Science and Society, p. 1

Introduction

Crick, Wilkins and Watson’s discovery of the genetic code of DNA in the 1950s enabled scientists to reveal the chemical dictionary out of which messages serving as blueprints for living structures could be made. The discovery of the elucidation of DNA signalled a turning point in genetics, viewed traditionally as a branch of biology that deals with heredity and the variation of organisms. Breeding by selection, the focus of traditional genetics and of Gregor Mendel’s early experiments in the 1860s, was gradually displaced by ‘a new genetics’ (Cranor 1994). The expansion of this new genetics meant that scientists were able to make biochemical alterations of the actual DNA in cells so as to produce novel, self-reproducing organisms. More importantly, the new genetics privileged the processes of genetic engineering (Minden 1987) which eventually came to be defined as the basis of a novel biotechnology (Bud 1993). The ultimate result was that scientists introduced human choice and design criteria into the construction and combination of genes.

Today, lay people as well as scientists are witnessing the massive proliferation of genetic technologies into many areas of modern social life. Our cultures have become increasingly dependent upon technical advancements in molecular biology. Through these advancements, members of the medical profession attempt to manage, if not prevent genetics diseases or those in which genetic factors play a part. Biomedicine, the medical arm of genetics, is a dominant paradigm in the Western world and in relation to the state, it holds a status analogous to that of the established Church in the medieval period (Currer and Stacey 1991: 1). Genetics occupies a central place in people’s consciousness, as biology becomes increasingly the filter through which humans are expected to interpret the world (Lundin 1997). We are continually being told by experts that research into the human genome will lead to immense progress in knowledge, prevention and treatment of disease. On a global scale, medical scientists say that the use of genetic technologies in developing countries will contribute to the prevention of genetic diseases (Spallone 1989). Nevertheless, a growing number of individuals may be or have become labelled on the basis of their genetic information. They face the risk of genetic discrimination. For pregnant women, developments in reproductive genetics are shaping new values for the standards of reproduction – values to which all pregnant women are told they should conform.

Indeed, the medical organisation of childbirth and childbearing has changed dramatically over the past fifty years through the development of prenatal genetic technologies. These technologies are used for foetal analysis, and can be either non-DNA-based (i.e. unrelated to genetics, such as ultrasound scanning) or DNA-based (i.e. related to genetics and blood or serum collection, such as chorionic villus screening, maternal serum screening or amniocentesis). The primary focus in this book is on DNA-based prenatal techniques. However, both non-DNA and DNA-based practices are used in conjunction with each other in the search for foetal abnormalities. Some experts see non-DNA-based procedures as genetic technologies because these tend to be linked procedurally in reproductive medicine. On another level, prenatal technologies are ethically the most difficult applications of genetics (Henn 2000).

In this chapter, I will first focus on the working of prenatal politics and then I will look at the various techniques and procedures used in reproductive genetics. Lastly, I will offer a case study of one of these techniques, molecular genetic testing, and the targets of these tests, ‘normal patient families’.

Prenatal politics, gendered bodies and commodification

The English word ‘prenatal’ comes from the Latin words prae and natalis, meaning ‘before’ and ‘to be born’ respectively (Concise Oxford Dictionary 1995). Thus, ‘prenatal’ connotes the time existing before being born and it appears as if the word itself signifies the foetus (who is ‘before being born’) more than the pregnant body that carries the foetal body to term. This meaning of ‘prenatal’ is semiotically loaded. As they concentrate more on the foetus and its health than the pregnant woman, some medical experts working within the discipline of reproductive medicine take this meaning to heart. Experts argue that ‘a multidisciplinary approach to the foetus is an essential part of antenatal screening’ (Malone 1996: 157). This view suggests that the foetus more than a pregnant woman is the physician’s main focus during the prenatal period. The workings of reproductive genetics expose the long-standing feminist unease that the medicalisation of reproduction, pregnancy and childbirth has more often than not been against the interests of pregnant women, making them objects of medical care rather than subjects with agency and rational decision-making powers.

Susan Bordo (1993a: 88) contends that the ideology of the woman-as-foetal-incubator pervades women’s experience of pregnancy. Pregnant women are neither subjects nor treated as such, while their foetuses become ‘super subjects’ (i.e. more important than pregnant women ‘subjects’). This representation of women as objects of mechanical surveillance rather than active recipients of prenatal care is an obvious message of pictures displaying the first ultrasound device used in Glasgow, Scotland, as Oakley (1984: 159) demonstrates. But, many prenatal technologies objectify women and uphold this ideology of woman-as-foetal-incubator.

Prenatal politics exist. They are the application of specific ideological beliefs, knowledge and medical procedures on developing (in pregnant bodies) foetuses, viewed as the nascent embodiments of the future. While prenatal politics are more foetus-directed than pregnant women-directed, pregnant women bear the brunt of damaging beliefs and painful procedures. Pregnant women are more done to than the doers, as their foetuses’ performances are appraised over time through various technical procedures. Prenatal politics operate in the discursive spaces of knowledge and practices generated by the universalising system of reproductive genetics during pregnancy. DNA, reproductive material, foetuses, gendered bodies and reproductive functions are surveyed and managed in a multiplicity of ways with the effect that pregnant women are compelled to take ‘security measures’ (Hubbard 1986) necessary for ‘successful’ reproduction. When pregnant women choose what is generally seen by physicians as the ‘correct’ prenatal behaviour, these choices may be constructed more by the power conferred on physicians by these technologies and physicians’ ‘right to choose’ selective abortion than by their own pregnancy experiences (Doyal 1995: 141).

Through the workings of prenatal politics, biomedical discourses transform women’s wombs into highly managed social spaces – sites of discourses about ‘good’ genes, women-as-foetal-incubators, ‘good enough’ foetal bodies and disability. Within the context of the abortion debate in the USA, Nathan Stormer (2000) demonstrates how discursive practices on abortion bring together the womb and the public as a coincident location, prenatal space. For him, the convergence of prenatal bodies and public, political bodies has been accomplished through the convergence of biological and social domains in the discourse on abortion. Within the discourse of reproductive genetics, a divergence not convergence of pregnant bodies and foetal bodies occurs within the discourse of reproductive genetics. The ‘producer’ (the pregnant woman) and the ‘product’ (foetus) are detached prenatally by the use of prenatal technologies.

Prenatal politics are generated when pregnant women consume reproductive genetics for the foetus, the reproductive product and attempt to gain knowledge of its quality. In effect, the medical workforce facilitates the commodification of reproduction through the use of prenatal technologies that impart knowledge about the status of foetuses. On the one hand, the concepts such as high risk/low risk, afflicted/non-afflicted and carrier/non-carrier are traditional diagnostic categories, underpinning women’s reproductive behaviour and choices. On the other hand, through the commodification of reproduction these same concepts are constructed as descriptions of ‘embodied foetuses’ with economic labels. These ‘embodied’ descriptions conjure up various types of foetal body images in the minds of pregnant women, their significant others (partners, families, etc.), medical experts and society. Low risk, non-afflicted and non-carrier foetal bodies are viewed as more valuable both economically and physically in terms of what these potential social bodies can produce and how they are able to contribute to society. Economic relationships are introduced into human reproduction (Overall 1987: 49) because defective foetuses are viewed as prospective, burdensome human beings with a price tag on their heads as well as defective products. Normal foetuses are represented as potential human beings, productive products with a future full of prolific energy. Generally, reproductive technologies evidence a capital-intensive approach to medicine, treating reproductive care as well as reproduction as commodities. Thus, in a context where gender inequality is already present, the negative effects of these technologies upon women, especially the less privileged should not be surprising (Gimenez 1991: 335–6).

Given that the ‘products’ of women’s reproductive activities (conception, pregnancy and birth) can be ranked according to this system of child quality control, women themselves are ranked as ‘good’ or ‘bad’ reproducers. Undeniably, we have experienced a reproductive revolution – this technological upheaval in which a diverse series of medical advances have been allowed to insinuate and spread biomedical values (about ‘good’ genes, disability, women as foetal incubators and ‘high quality’ bodies, etc.) more indirectly (Lee and Morgan 1989: 3). While biomedicine has a tendency to ‘fracture social experience’ particularly those of pregnant women (Annandale and Clark 1996), reproductive genetics, emerging from this self-same biomedicine, may also rupture pregnant women’s experiences in a far-reaching way. Prenatal technologies have clear social dimensions and values, upholding a reproductive morality. For pregnant women, this usually means that they are drawn into a moral discourse about good foetuses and bad foetuses as well as their good or bad reproducing bodies.

Nevertheless, the technologies of reproductive genetics may have the potential for great benefits. These create possibilities for medical advances and opportunities to make choices about the health of future generations. But, these technologies are value laden and experts are making moral verdicts about foetuses. When looking at genetic technologies generally, Nicholas (2001: 46) contends that these technologies are constructing a new moral landscape and culture. They are disrupting long-established social understandings of how the world ‘is’, the meaning of the family, the place of humans in the biosphere and the role and responsibilities of the authorised knowledge makers of western culture.

From the above, we have seen that in the workings of prenatal politics, the practice of ensuring that healthy babies are being born has been intensified by the embedded practices of prenatal genetic techniques. Here, these techniques and their development must be seen as more than techniques. Prenatal technologies are the extension of human competence, proficiency, skills and values into the practice of reproductive genetics. In this context, assessment of techniques is the most popular and usual way of evaluating medical technologies (Morgall 1993). This method, ‘technology assessment’, may be limited as well as somewhat flawed; suggests a one dimensional or too simplistic view of medical technologies; side steps prevention by having no need to search for causes of any given deficiency and avoids important ethical questions. Here, I would contend that over and above technology assessments of prenatal genetic technologies, one clear, if not valuable assessment is that these prenatal technologies have consequences on the workings of social relations that go beyond their immediate application.

The techniques of reproductive genetics

Traditionally, pregnant women underwent prenatal screening for Rhesus factor, HIV, diabetes, etc. However, since the late 1950s, prenatal screening and diagnosis of pregnant women for the detection of foetal abnormalities has increased dramatically (Farrant 1985; Reid 1991; Rothenberg and Thomson 1994). This increase has been aided by the development of new medical technologies, specifically technologies of the new genetics, which aim at the avoidance of common genetic diseases (Wetherall 1991). One clinical geneticist, emphasising that these technologies were in diffusion, wanted all pregnant women to come under the ‘genetics’ umbrella. She said:

Genetic screening is well established in antenatal care and I think there could be a highly cost-effective package of making available a genetic counselling contact with all women (sic) as soon as they have a pregnancy contact …

(E 4)

Prenatal screening

Prenatal screening is the programmatic search for foetal abnormalities such as congenital malformations, chromosomal disorders, neural tube defects and genetic conditions among the asymptomatic population of pregnant women. A general belief upheld in the medical profession is that pregnant women are not forced to undergo screening, as one medical geneticist said:

If we talk about [the] prenatal screening program in the population, [they have] … their free will. I mean [there’s] not any law saying … [it is] … good to take the test [or you must take the test].

(Medical geneticist G 5)

Nevertheless, prenatal screening can cause problems for members of the medical profession. This is mainly because these screenings can be interpreted to mean mass population screenings rather than individual medical assessments of a woman’s pregnancy. One public health specialist reported that various interpretations of what prenatal screening means caused debate amongst medical professionals in her country.

For a number of years, there have been major anxieties about explosions of screening activity and the lack of control of it … particularly as these are public health programs. It’s not individual investigation is it? You’re screening. Some people … say we should be offering [Down’s syndrome screening] … as part of our assessment of pregnancy rather than seeing this as a program … The rational for a screening program is that you go to normally healthy people and carry out something which if you were asked to do [in] a straight forward assessment, you might not because for certain groups of women the risk around Down syndrome is very low. Would you offer that as part of the routine assessment of the problem [or] … would [you] do it as part of a population program? And so I think there is a debate around that.

(E 5)

Prenatal screening can also be viewed as the selection of the proportion of the population of pregnant women who is at increased risk for an abnormal condition. The various methods of prenatal screening include advanced maternal age, biochemical screening for neural tube defects and Down’s syndrome, ultrasound and screening for recessive conditions such as haemoglobinopathies (sickle cell disorders, beta thalassaemia major, etc.) that involves genetic tests (Marteau et al. 1994). Through prenatal screening, women in high-risk groups are identified for additional testing.

Age

Advanced maternal age is currently seen as a risk factor, given that it is estimated that a higher percentage of women over thirty-five give birth to Down’s syndrome babies than women under thirty-five. It is generally accepted in the medical profession that these ‘older’ pregnant women account for 20 per cent of Down’s syndrome births (Committee on Obstetric Practice 1994) and that Down’s syndrome is the commonest single cause of severe mental retardation in children (Chard 1996).

Triple test

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Table of contents

• Cover
• Reproductive Genetics, Gender and the Body
• Title
• Copyright
• Contents
• Acknowledgements
• Introduction: The sociology of reproductive genetics: the institutions of reproduction and gender and genes in bodies
• 1. Prenatal politics and ‘normal patient families’
• 2. Biomedical knowledge and interests: Genetic storytellers and normative strategies
• 3. Organisation of ‘genetics work’: Surveillance medicine and genetic risk identity as a novelty
• 4. Shaping pregnant bodies: Distorting metaphors, reproductive asceticism and genetic capital
• 5. Gendered bodies, the discourse of shame and ‘disablism’
• 6. Synchronising pregnant bodies and marking reproductive time: Comparing experts’ claims in Greece, the Netherlands, England and Finland
• 7. Reproductive genetics and the need for embodied ethics
• Bibliography
• Index