Instrumentos de evaluación

The procedure of taking amniotic fluid, during the fifteenth and sixteenth weeks of the prenatal period (Lynch, 1 999), to assess the genetic and biochemical condition of the unborn baby was developed in the 1 960s (Kolker & Burke, 1 994; Paul, 1 995). Cowan ( 1 994) writes that amniocentesis took 1 5 years in its development before it could be made widely available. One condition Cowan states that delayed the development and availability of amniocentesis was that in 1 960 only Copenhagen legally permitted "eugenic" therapeutic abortions. The ability to use ultrasonography to identify the moving fetus and the position of the placenta also facilitated the development and safety of amniocentesis (Rapp, 2000).

Initially amniocentesis was first used to identify the sex of the fetus. According to Farquhar (1 996), amniocentesis became more "mainstream" when the numbers of women delaying childbirth increased and maternal age was added as an indication for amniocentesis. In New Zealand, Professors Bill Lilley and Mont Liggins first developed amniocentesis at National Women's Hospital in relation to their work in rhesus haemolytic disease (Fisher, personal communication, September 1 8, 200 1 ). It was not until the 1 970s that amniocentesis was perfonned for genetic testing. According to Fisher, only high risk women, which included women aged 37 years and over, were offered amniocentesis at National Women's. Amniocenteses were initially carried out only in the public hospitals until the 1 980s when private fertility centres such as Fertility Associates were established. There was some discrepancy throughout New Zealand about the age at which women were offered the tests, as some areas used the age of 35 as the cut-off. In the 1 990s the age was standardised to 35 years, partly to ensure equity and partly because the risk of one in 200 of having a child with genetic abnonnalities was regarded as a "reasonable risk".

CVS12 became available in New Zealand in 1 9 8 1 (Birdsall, Roberts, Fisher, Beecroft & Bailey, 1 992). Its earlier timing allows for less traumatic tenninations to occur in the first trimester than for amniocentesis (Rapp, 2000). The likelihood of the woman miscarrying her baby as a consequence of CVS is one per cent, the same as with an amniocentesis. There is also a 2 per cent possibility that the woman may have a spontaneous miscarriage, one that occurs in the first trimester but is not caused by the CVS itself (National Women's Hospital, 2000). Older women have a higher rate of spontaneous miscarriages (Kolker & Burke, 1994).

In New Zealand both amniocentesis and CVS are available at no cost to women

who meet one of the following criteria: having had a previous baby with chromosomal abnormalities; a nuchal screen or Maternal Serum Screen test that indicates that they are at high risk of carrying a baby with chromosomal abnormalities; or, they are aged 35 years or over at the time their baby is expected to be born.

More recently, a non-invasive test called nuchal screening has been developed13• Nuchal screening is carried out in between the eleventh and fourteenth weeks of pregnancy (National Women's Hospital, 2000). However, it does not give the woman the same surety of evidence as CVS and amniocentesis. Nuchal screening only provides the woman with a statistical risk probability. If an increased nuchal skin fold thickness is found, the woman then needs to decide whether she will have an amniocentesis.

Ultrasounds have become a routine feature of antenatal care (Kolker & Burke,

1 994) and are regarded by women as an opportunity to see one's baby (Green, Statham

& Snowdon, 1 992; Taylor, 2000) rather than a method of screening or diagnosing abnormalities. The potential exists for nuchal screening to occur insidiously, without the woman's or practitioner's knowledge. Venn-Treloar (1 998), a British doctor, realised that during a routine antenatal ultrasound scan that she underwent that the ultrasonographer had been measuring her baby's nuchal skin fold. She states, "I realised how close I had been to the receipt of non-specific information from a test that I had not consented to. If the baby had had Down syndrome I could have been told and been troubled for the rest of the pregnancy" (p. 1 027). An incident was related to me by an

12 CVS is the process whereby a sample of placental chorionic tissue is obtained and tested for biochemical and genetic information. The test is performed in the first trimester of the

pregnancy between the ninth and eleventh weeks.

13 Nuchal screening involves the use of ultrasound to estimate the thickness of the skin at the back of the fetus' neck. As the thickness increases, so does the likelihood of the baby having a chromosomal abnormality (Martin, 1998).

independent midwife who had received an ultrasound report informing her of a "positive" nuchal screen result. The midwife had neither requested the screen nor discussed it with the woman. She felt obliged to relay the findings to the unprepared woman.

As referred to above, the ability to prenatally test the genetic condition of the fetus shaped the 1 977 Royal Commission's recommendations regarding the termination of fetuses found to be "abnormal". The Royal Commission represented amniocentesis as a valid and reliable means of identifying the presence of abnormality during the antenatal period. They wrote,

In this way [Le. amniocentesis] it is possible to establish, in the case of certain diseases, an absolute identification of a fetus affected with a serious disorder, inconsistent with normal physical or mental development, and with no prospect of responding to rational treatment.

1 977, p. 208 No mention IS made of amniocentesis' fallibility: that sometimes a false

"positive" or false "negative" reading can be made.

Amniocentesis, CVS and nuchal screening can be technologies of domination.

They provide the means whereby the fetus is rendered visible. As tests, amniocentesis and CVS produce the fetus as the object of a hierarchical and normative gaze. The fetus becomes known in terms of its chromosomal make-up. It can then be qualified, classified and normalised through abortion. The discourse of medical genetics inscribes the abnormal fetus as different.

The medical genetic discourse and the disabled rights discourse offer-contesting representations of the significance of the prenatal genetic tests. The medical genetics discourse gives two meanings to genetic testing (Shakespeare, 1 999). Firstly, genetic testing allows parents to avoid the "disaster" of having a child with chromosomal abnormalities. Secondly, genetic testing is represented as offering "narratives of optimism". According to Shakespeare, one such narrative is the "narrative of hope" whereby affected families are offered a "cure" or "treatment". Ironically the "cure" is preventing the birth of an affected child. In addition, the optimistic belief that women make their decision on the basis of free choice and informed consent is both misplaced and complacent. Women may not have access to full unbiased information or sufficient counselling following "negative" results.

From the perspective of the disabled rights discourse, prenatal genetic diagnosis is viewed as eugenic. Speakers of this discourse propose that the purpose of prenatal genetic diagnosis is to eradicate the disabled (Donley, 1 994; Shakepeare, 1 999). Concern exists that ethically prenatal genetic tests are the beginning of a "slippery slope" (Rothman, 1 993). It is believed that by allowing the abortion of Down syndrome fetuses the way is opened for terminating other "genetic abnormalities" identified by developing technology. This perspective highlights the shifting and contextual nature of the defmition of the boundaries between normal and abnormal.

For writers such as Finger ( 1 984) and Saxton ( 1 984) the performing of prenatal genetic diagnosis for the reason of aborting potentially disabled children promotes and perpetuates negative attitudes towards the disabled. The argument that prenatal genetic diagnosis lessens the economic and emotional burdens placed on the families of the disabled is questionable (Kaplan, 1 994). Kaplan argues that research into the actual costs of disability has been insufficient to support this claim. The assumption that all disabled children will disrupt their families is contradicted by the views held by some families that their experience of disability has enriched them. By society continuing to support prenatal genetic diagnosis and termination without questioning the reasons for such practices, Kaplan states, the physical, economic and attitudinal barriers that contribute towards disability are perpetuated. These barriers are not necessarily a consequence of being disabled but are created by the discriminatory practices and attitudes held by society.

Feminists are another group who contest the routinisation of prenatal genetic diagnosis (Rapp, 2000). Feminists such as Corea ( 1 985) and Rowland ( 1 992) observe that the age for when women are offered amniocentesis has been gradually lowered since its introduction. Originally it was offered to women aged 40 to detect Down syndrome but now it is offered to 35 year old women. Moreover, prenatal genetic diagnosis is used to identify a wider range of conditions (Rowland, 1 992). Klein ( 1 988) argues that the guilt engendered by choosing to give birth to a child with chromosomal abnormalities can erode women's control over their "procreative capabilities". Early feminist authors such as Corea ( 1 985) warned of the potential for some prenatal tests to become mandatory thus removing women's choice. Indeed, in 1 986 the state of California made it mandatory that the blood test for alpha fetoproteins be offered to all pregnant women before their twentieth week of pregnancy (Browner & Press, 1 995). These authors observed 35 sessions where women were informed of the availability of

the test. Browner and Press fOWld that "providers offer no more information than is absolutely necessary to make women aware of the test's existence" (p. 3 14). Furthermore, they fOWld that information was given in a way that encouraged women to have the test.

As Farquhar ( 1 996) and Rapp (2000) point out, the problem with some of the feminist arguments is that they construct women as passive subjects of the prenatal diagnostic technologies. "This discourse of domination is not only impervious to the pleasures of stimulation that prenatal technologies offer women. It also ignores the way even dominant, routinized technologies Wlwittingly mobilize diverse opportWlities for perverse appropriation and strategic opposition" (Farquhar, 1 996, p. 1 69). Rapp (2000) argues for the recognition of science as a heterogeneous domain rather than a Wlified adversary.

My analysis thus far has only explored the connection between abortion and the technology that has facilitated the practice of prenatal genetic diagnosis. The interconnections between the medical genetics discourse and the practices of abortion and amniocentesis serve to legitimate one another. However, the representation of prenatal genetic diagnosis is made complex by the contesting discourses of feminism and the disabled rights movement.

The disabled rights movement argues that the meaning of disability is socially constructed and that historical, social and economic contexts influence its

representation. In the following section the changing meanings of disability with

reference to Down syndrome are described and analysed.