Enfoques para la evaluación de políticas públicas

For the independent midwives, GPs and obstetricians, the act of making the

increased possibility of chromosomal abnormalities for older women explicit was standard practice. They perceived that ensuring older women's awareness was the practitioners' responsibility. As exemplified in J ane and Phillip' s excerpts above, if the woman does not initiate the topic herself then the practitioners will. In this way the

maternity practitioners will consistently expose older women to the medical genetic discourse. The knowledge that is conveyed to the woman is her "risk" of having an "abnormal" child. The first choice that she is offered is access to the knowledge of whether her child is abnormal or not, and the second choice is whether or not she wishes to continue to bear an abnormal child. The provision of knowledge and the offering of choices to the woman come from within the neo-liberal discourse.

Implicit in the neo-liberal discursive practice of ensuring informed choice is the significance attributed to the act of verbally conveying information. Verbalisation makes visible the process of informed choice, the informing subject (the practitioner) and the informed subject (the woman). As speakers of the medical genetic discourse, the practitioners maintain and perpetuate their position as experts and enforcers of informed choice. The position of older women is similarly maintained as objects and subjects of

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the medical genetic discourse.

The act of speaking to is assumed to produce consciousness and knowing in the listener by knowledge being conveyed from the speaker to the listener. Should the informing practitioner not speak to the woman, then the practitioner has not provided an opportunity for informed choice. If the woman does not initiate through speech her questions or decision about prenatal genetic diagnosis, the practitioner assumes that she is not aware of the risk of abnormalities and subsequently the practitioner is impelled to speak.

It IS important to note that the normal (negative resultlbaby without abnormalities) is not spoken of in any of the transcripts. It remains the silent, the invisible "other" from which the abnormal derives its meaning. By not speaking of the normal, the abnormal is constructed and thus made visible. The abnormal baby's existence is made potentially undesirable and optional. To have the knowledge that things are normal is assumed to be an end in itself, a non-choice, and the desirable outcome.

The exercise of informed choice is seen as having the potential to empower women to allow them to make a decision. Women become free to make a decision or as Harding puts it; they become liberated. Harding (citing Haug, 1 987) suggests that "an unquestioning acceptance of the categories nominated in medical discourse implies that knowledge is a neutral and transparent instrument, which once possessed will liberate the formerly oppressed. Knowledge appears neutral because it is constructed as external

to power" (pp. 140-14 1). As Ettore (2000) argues the recognition of causes other than age, such as environment, remains hidden.

In the discursive practice of informed choice, the knowledge brought to the foreground is scientific knowledge, which constructs the human body as a machine and the female body as a fetal container (Ettorre, 2000). The older female body is depicted as one that as a consequence of the degenerative process of aging inherently carries a greater number of defective genes. The discourse of disability as a social construction and of causes other than biological aging are silent and thus marginalised.

The process of imparting information to the woman also involves the transference of responsibility from the practitioner to the woman. The woman is responsible for her decision. By this means, the practitioner has performed his or her ethical and contractual duty and is no longer responsible should the woman decide against prenatal genetic diagnosis and then give birth to a child with abnormalities. The woman as an autonomous and rational agent is the one who, on the basis of the information that the practitioner has provided her, makes the decision.

This depiction of sUbjectivity and the neo-liberal concept of informed choice are derived from the liberal political discourse, a form of humanist discourse (Weedon, 1 997). Humanism implies that rationality is a universal feature of human nature. The subject is constructed as constant, sentient, and knowing. O'Malley (1 996) states that the person who makes a rational choice views the situation/information in terms of costs and benefits. They assess and compare the potential benefits and the potential costs and

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make their decision on the basis of their evaluation. The rational decision is one where the benefits outweigh the costs.

In terms of specifically talking about screening, for some women they will self-select if there has been a clear family history that is relevant.

In terms of a cut off age, I don't think that there is one. I think it's a grey zone, and as we know there is a graduated change of incidence of chromosomal abnormalities than those above. But that overall in pregnant women, . . . women who do get pregnant there are going to be

more below 35 who actually have congenital abnormalities than those

above. It's just that the peak incidence is quite different so that it must

be discussed in this day and age of informed consent with all women,

and hopefully discussed reasonably objectively in terms of the likelihood. The likelihood in New Zealand is that the public system will support amniocentesis or CVS beyond the age of 35, and that's pretty much an international recognition of when it can be done free within the public system. That's quite a good guideline to help women

make that decision. But I would certainly want to initiate that discussion if they hadn't done so themselves.

Henry, Obstetrician, italic emphasis added

Here, the practitioner may be seen to appeal to a woman's desire to be rational and to conform, when he refers to the government's support and international recognition of prenatal genetic diagnosis for women aged 35 and over. He appears to be implying that if the government is willing to pay the costs for such women to have the tests, thereby making the tests free and more accessible to this particular group of women, then there must be some sense or good reason for it. Prenatal genetic diagnosis for older women is in this way made normal (Browner & Press, 1 995) and common sense. The inference is that if the government supports particular women having the tests then such women should give them serious consideration.

Emergent from some of the practitioners' transcripts was their belief that the woman was responsible for the decision regarding prenatal genetic diagnosis. For example:

I worry about terminations, it doesn't seem quite right, but it is

devastating to have an abnormal child. So I think that the decision is

the woman's really. She raises it.

Timothy, Obstetrician

It is an individual experience and it is for individual women to decide. All they need is information. They are perfectly capable of making the decision for themselves. I think that it is extremely arrogant of anybody to lecture somebody into having something that they may not feel is right for them. It assumes you know what their relationship is. It assumes you know what they want out of their lives. It's just an assumption of power. You've got no right to do that.

Jennifer, Independent Midwife The practitioners aim to give women the space to come to their own decisions. However, there are differences in the way in which they position women. Timothy, for example, deploys a maternal discourse which positions women as the parent most responsible for the child's upbringing. In contrast, Jennifer clearly places women within the feminist discourse deploring the patriarchal practice of denying women their right to autonomy.

However, the practice of informed choice in relation to prenatal genetic diagnosis for older women is ironical. While it is a technique of power in which

women's right to be self-determining is recognized, I would argue that the neo-liberal concept of individual freedom of choice (potter, 2000) combines with the medical genetic discourse to be a practice that individualizes women.

F oucault ( 1 977) proposes that the consequence of discipline is individualization of the subject. By this I understand Foucault to mean that through the medical genetic discursive practice of prenatal diagnosis each woman 35 or over comes into visibility as

an entity, as a woman who is at of risk of having an abnormal baby. Not only that, her decision about whether or not to pursue diagnosis, made on the basis of knowing what her options are and what the implications of her decision are, becomes known and registered in the practitioner's documentation. Thus the conduct of women aged 35 and over is brought into the visibility of the medical gaze and judged.

These have become both visible, the objects of a certain regime of visibility, and cognizable, no longer lost in the fleeting passage of space, time, movement, and voice but identifiable and notable insofar as they conform to or deviate from the network of norms that begins to spread out over the space of personal existence. [ . . . ] The person is produced as a knowable individual in a process in which the properties of a disciplinary regime, its norms and values, have merged with and become attributes of persons themselves.

Foucault, 1 977, p. 1 05- 1 06 The neo-liberal process of informed choice makes visible the woman's autonomy as a value and hence her responsibility for the outcome. Rothman ( 1 993) argues that by individualising women, the other members of society are saved from having to collectively provide assistance to the needs of these women, "we make it the woman's own. She 'chooses', and so we owe her nothing. Whatever the cost, she has chosen, and now it is her problem, not ours." (p. 1 89). Except for Alice and Timothy, who mentioned the need for the partner to be consulted, all the practitioners believed that the decision regarding prenatal genetic diagnosis was one that must be made by the mother.

However, the degree to which the woman makes an autonomous decision based on neutral knowledge is questionable. Canadian researchers, Bouchard and Renaud ( 1 997), propose that the medical profession both provides access to prenatal genetic diagnosis and determines the values pertaining to its use. I have shown above how the woman's age will determine the quantity of information given by the maternity practitioners to the woman. Henry, noted above, drew on the government's policy of

subsidy to legitimate older women having prenatal genetic diagnosis. Daniel stated what he would say to 37-year-old women:

I don't recommend to 37 year olds that they should have an amnio. What I say to them is most 37 year olds choose to. I put it as a choice, not as a "I think you should".

Daniel, Obstetrician

While Daniel implies that he does not suggest to older women that they should have prenatal genetic diagnosis, I would suggest that his practice of telling a woman that most women of similar age decide to undergo amniocentesis conveys a meaning of normalcy for older women to be sUbjected to prenatal genetic diagnosis. Intentionally or unintentionally, he is consolidating the medical genetic discourse and undermining the woman's autonomy.

One of the midwives and one of the GPs talked of how they encouraged women

to think about the consequences of receiving a positive result:

I also ask them, "Would you do anything about it? You have to think

if you do have the testing even if it is Down syndrome if you wouldn't change your mind, if you wouldn't alter the pregnancy, then don't do it".

Jane, GP Jane's excerpt shows how she uses the same rationale as did some of the women for deciding against prenatal genetic diagnosis. I have suggested in the previous chapter that this is one strategy that may be used to avoid the normalizing surveillance of prenatal genetic diagnosis. However, the practice dismisses the reassurance that some women may gain from having the test or if they should receive a positive result, the possibility that they might view the knowledge as an opportunity to prepare for their baby. By calling on the value that a woman places on human life, such a practice does attempt to influence the woman's decision thereby undermining her autonomy.

The medical genetic discourse, in overlapping with the legal discourse, creates a third subject position that was articulated by the practitioners: the practitioner who is concerned about the possibility of being sued for the wrongful birth of a baby with chromosomal "abnormalities".