La evaluación pragmática de políticas públicas*
9. Dificultades y soluciones
Foucault's concept of power as fluid and contestable, that everyone has the potential to possess comes to light in the context of the legal discourse. The potential always exists for the older woman to contest the professional's practice. Four of the practitioners talked of how they felt that their practice of informed choice had the potential to be surveilled by the mother particularly, if she was to give birth to a baby with abnormalities that could have been detected during the antenatal period.
I had a 29 year-old once who had a Down's baby and if that [maternal serum] test had been available then, she would have said to me, "Why didn't you offer me that test?" So you have to offer it to everybody.
Daniel, obstetrician Daniel believed that he could have been held responsible for the birth of this baby who had Down syndrome. His example reveals how new technologies produce novel "conditions of possibility" (Balsamo, 1 996, p. 98). The development of a screening test that is non-invasive and poses little risk to the woman presents the practitioner with a new scenario. The insertion of the legal discourse into the medical genetic discourse produces vulnerability to legal challenge. No longer is the potential for women to legally challenge him for neglecting to inform them of their risks of chromosomal abnormalities and prenatal genetic diagnosis options limited to older women. Now all women no matter what their age can claim the right to be informed of the opportunity to be tested.
Daniel also perceived that the general availability at that time of the non invasive blood test placed an onus on him to make all pregnant women aware of its existence. The availability of technology, particularly when its access is facilitated by the government's subsidy, has the potential to constrain practitioners. Browner and Press ( 1 995) found that following the State of California's legal mandate that every pregnant woman be offered the alpha feto-protein maternal serum test by health professionals, that all the providers involved in their study observed the legal mandate.
The independent midwives, Rayna and Margie, and another obstetrician, Henry,
echoed Daniel's sense of responsibility for ensuring the birth of a nonnal baby. I had
asked Margie about a statement that she had made earlier:
Int: So there seems to be an issue of accountability with that example. [when one of her clients gave birth to a child with Down syndrome] Have I documented it, for example?
Margie: Yes, too right. Have I left myself open for criticism? It is that
business about the perfect baby and that you, in a sense, are responsible, accountable for helping a woman to get a perfect baby. If you don't explore all that stuff with them in the beginning then you could be seen to be perhaps not doing your job properly.
Margie, Independent Midwife
The way in which Margie is responsible for women having babies without defects is to make certain that women have access to the technology that provides them with the opportunity to know whether they are carrying a baby with abnormalities or not. Thus not only ensuring women's opportunity to have choices but also that they do not have abnormal babies is an expected aspect of standard practice.
Int: Someone once wondered if in the future there may be legal accountability if it is not addressed, if they weren't informed of that?
Yes, that was my first panic reaction, [when a client who was an older mother gave birth to a baby who was diagnosed as having Down syndrome] Had we talked about it? I looked through the notes and I had mentioned it.
Margie, Independent Midwife
Margie exemplifies how some practitioners may fear that their practice of informed choice might come under scrutiny in the future has produced their defensive practice of documentation. Margie's example shows that the woman's earlier decision not to undergo prenatal genetic diagnosis remains captured and visible, something that the woman cannot renege on easily. The written notes became a fixed piece of evidence that vindicated Margie of responsibility for the "wrongful birth" of the "abnormal" child. The woman cannot contest responsibility for what has occurred.
Three of the practitioners mentioned the need to be rigorous m their
documentation when addressing the issue of prenatal genetic diagnosis with women
aged over 35:
Certainly when women get beyond the age of 35. I think that it's much
more, it's clearly, highly relevant to be . . . very thorough in those
discussions and to record that you have made those discussions and to
record whether they have wanted to act on them or not.
Henry, Obstetrician Positioning themselves as vulnerable subjects produces the midwives and medical practitioners' practice of documenting the decisions made by women with regard to prenatal genetic diagnosis. Their practice also reveals the hierarchical nature
of surveillance. As the woman is placed under nonnative surveillance so IS the obstetrician (Balsamo, 1 996) and the independent midwife. Foucault writes:
the examination that places individuals in a field of surveillance also situates them in a network of writing; it engages them in a whole mass of documents that capture and fix them. [ . . . ] A 'power of writing' was constituted as an essential part in the mechanisms of discipline.
1 977, p. 1 89 The Maternity section 5 1 contractual specifications have the potential to place
practitioners' practice of infonned choice under close examination. In turn, the
specifications require the practitioners to monitor the pregnant women and to ensure older women's awareness of the likelihood of abnonnalities.
However, it is not just the government agencies that watch the practitioners. It is
the women themselves. Charo & Rothenburg (1 994) identify the irony for maternity
service providers that in exhorting older women to undergo prenatal genetic diagnosis their expectations are increased. The repercussion is that maternity service providers become more enmeshed in having to provide the tests because they are anticipating medical negligence suits. This was illustrated by Rayna, who said:
Basically everything you utter has to be written because that is what is going to happen. There are going to be a lot more court cases probably, different things. So, yes anything you talk about, even polycose tests. You have to write it down; discussed polycose test and date it.
Rayna, Independent Midwife Arney ( 1 982) writes of how the technology and other strategies that have been developed and employed by obstetricians to monitor childbirth have subsequently been used to control and surveil them. The women are in a more powerful position than the practitioners are. The practitioners' failure to infonn women of the prenatal genetic diagnosis options available to them can lead to women seeking litigation under the 1 994 Code of Health and Disability Services Consumer Rights. As Balsamo ( 1 996) points out however, although the practitioners may construe themselves as vulnerable to discipline, one must not overlook that their position has been achieved through historical contests. They still retain more of a position of authority than do women.
While the medical genetic discourse was the dominant discourse within the talk of the practitioners, there was one practitioner, who did not position herself within it.
She took a stance which opposed the beliefs of the medical genetic discourse and this stance is discussed in the next section.
7.6 THE OPPOSITIONAL DISCOURSE
When I interviewed Joanne, she had recently retired from midwifery practice.
From 1 992 she had only cared for multiparous women and from 1 993 had acted as second midwife. Her clients had been women who had earlier had her as their homebirth midwife. Much of her practice then had been prior to the introduction of midwifery autonomy and had not been in the new role of Lead Maternity Carer. With the exception of J oanne, all the practitioners positioned themselves within the medical genetic discourse which locates the cause of Down syndrome with biologically induced
changes of aging in older women's bodies. In contrast, for Joanne the cause of Down
syndrome was older women's increased exposure to environmental pollution. Her oppositional positioning reflected the same beliefs as Rosalie in Chapter Six. Joanne outlined her beliefs and observations as below:
I do think that there are far more genetic 'abnormalities' now than when I first started to do homebirths. I think that you are looking at environmental pollution. You're looking at all your junk food, and you've got that combination. So you are deficient in vitamins and minerals. Then you are going to have far more genetic 'abnormalities'. [ ... ] I see prenatal testing as akin to the nuclear issue, you know, like
they never should have embarked on it. And, the other thing is what they need to do is instead of doing all that testing and one thing and another, what they really need to do is to clean up the environment. But instead of that, what they are doing is making it appear that there's something wrong with the woman. There's nothing wrong with the woman. It is wrong with your environment. But the thing is that it's going to cost these multi-nationals so much money to clean up the environment that it is better to put the blame back on these women. Then the other thing is, another purpose of this genetic screening is that the whole idea of it is that if there is something wrong with the fetus then you're really supposed to terminate it. OK? Well, the thing is, if you don't and you have a baby that is retarded or what have you, then what they're looking at is that if you're going to go ahead and have this baby when you know it's not the full quid, then it should be eventually, . . . it'll be your responsibility. Because you had the opportunity to do something about it and you didn't. That's what we are really looking at. And if it's something genetic, the insurance companies now are even looking at it, well, they won't insure it. That's the whole purpose of it. So, when you are talking about your perfect baby, it's not the fact that you may not be able to get pregnant again. It's the fact that you're supposed to have a perfect baby,
whatever it is. Something that's not going to cost the state anything in the long term.
Joanne, Independent Midwife Joanne challenges the medical genetic discourse in that she argues that there is a link between a woman's dietary intake, her exposure to environmental pollution and the incidence of chromosomal abnormalities. Subsequently, she attributes the chromosomal changes in older women's eggs to exposure to external factors such as these and not to an intrinsic biological aging process. Consequently, the woman's body is the object that is made visible, and is constructed as the cause for such deviations and subsequently subjected to surveillance and normalization.
Joanne deploys a socialist analysis in her identification of the economic interests that benefit from remaining invisible and from the maintenance of women's bodies being viewed as the problem. It is more economically expedient, she argues, for women to be tested than for the companies producing the ')unk food" and the pollution to change their production processes.
A second responsibility shift that J oanne identifies is that from the government to the woman. She proposes that in the future it may be possible for the government to refuse any support to the woman who has decided against prenatal genetic diagnosis. Similarly, she sees insurance companies refusing to insure people with disabilities which could have been detected through prenatal genetic diagnosis.
7.7 SUMMARY
Analysis of the maternity practitioners' texts in regards prenatal genetic
diagnosis has revealed the deployment of multiple discourses. The neo-liberal discursive practice of informed choice, which, as explained in Chapter Five, has permeated both policies and laws that apply to the maternity practitioners. The discourses of medical genetics, neo-liberalism and law overlap to provide the practitioners with manifold subject positions: the expert informer, the enforcer of informed choice and the vulnerable practitioner. The latter subject position has occurred as an ironic consequence of the other two discursive positions. The neo-liberal and legal discourses together reinforce and perpetuate the hegemony of the medical genetic discourse.
I would suggest however, that the legal discourse complicates the motives of the practitioners. Their interests in ensuring that pregnant women aged 35 and over are
infonned of their risks may not purely be to ensure that women can exercise infonned choice. Practitioners may also wish to avoid being punished for the wron
gfu
l birth of a baby with chromosomal "abnonnalities". They are in the invidious situation of being responsible for ensuring that women are infonnedI have also identified a comparatively marginalised discourse that contests the medical genetic discourse's theory of causation. This discourse proposes factors external to the woman's body; factors which would involve complex changes that would implicate multiple social bodies.
The decision regarding prenatal genetic diagnosis is one that is dealt with in the first half of pregnancy. Having explored the texts of the practitioners and the women in relation to the practices and the choices concerning prenatal genetic diagnosis, in the following chapter I analyse maternal age in relation to pregnancy and birth.
Chapter 8: WOMEN AS SUBJECTS OF THE MEDICAL