Discussion
Over the past three decades, genetic counselling has undergone many transformations, increasing regulation and standardisation of PND consultations. Although the objective is to take better account of women’s viewpoints in a decision-making process, these changes give PND consultations a particularly restrictive framework. The obligation placed upon practitioners to inform women, in an objective, neutral and accessible way, of the two types of risk that they are facing (that of having a disabled child and that of having a miscarriage) tends to make interactions more rigid. Our observations confirm the obstacles that stand in the way of this objective. They demonstrate the distress women experience when having to make a decision that affects the life of the child they carry,31 and the difficulty for practitioners to maintain neutrality in light of the heterogeneity of women’s backgrounds, their beliefs, level of understanding as well as social and ethnic origins.21 Our study suggests that in most situations the stated objective of neutrality is unachievable. However, one might also question what the objective of these consultations actually is. If the objective is to guarantee women’s and couple’s freedom of choice, our analysis suggests several ways to achieve it. Reaching a decision on whether or not to have a sample taken, after understanding everything that is at stake, is just one of several modalities for achieving this objective. Furthermore, as we have seen, this modality supposes that the protagonists engage in a common frame, that of the medico-scientific expertise, that emotions do not run too high and that women feel that they can legitimately interact with the practitioners. Yet these conditions are far from being systematically met.
The first lesson learned from our analysis is that the protagonists can participate in the consultation by navigating between different frames, which can lead to communication problems and distortions. For the practitioner engaged in the medico-expertise frame, the act of informing in a neutral and objective manner is the condition for respecting the woman’s autonomy, whereas for the woman engaged in the medical authority frame, it can be a sign of imminent bad news. Designed to help the woman make her decision, information instead causes distress and hinders her reflective capacities. Similarly, whilst for the practitioner the act of informing is a prerequisite of consent, for the woman engaged in the religious authority frame, it can be interpreted as the negation of her opinion – an opinion she is not even asked to give. Once brought to light, it should be possible to find practical solutions for these distortions.
The second lesson learned from our analysis is that the emergence of a decision does not come about in a unique action frame that should be preferred. On the contrary, we were able to identify different configurations resulting from distinct arrangements of the frames used during consultations. This might mean repeated incursions into the compassion and/or medical authority frames to contain emotion, to then return to the medico-scientific expertise frame; or an assumed distancing from the role of expert; or a voluntary and assumed delegation to medical authority. In other words, despite the considerable constraint that practice regulations impose upon the coordination of actions, in certain situations the protagonists manage to restore fluid and continuous interaction, adapted to their expectations and values and orienting them towards a decision.4 This observation clearly demonstrates the limited relevance of abstract notions such as neutrality and non-directiveness when it comes to qualifying and taking account of the work done by protagonists during consultations. The various configurations of consultations identified in our analysis indicate that, on the contrary, practitioners’ relational involvement, and even in some cases practitioners’ directiveness, might be necessary to maintain/ restore interaction and enable women and couples to exert their reflective capacities.
Aiming for women’s autonomy as conceptualised in the philosophical tradition as rational individuals’ capacity for self-determination, may therefore not be appropriate to ‘real-life situations’ of PND consultations. Indeed, women’s enfranchisement from material and social considerations that underpins this definition was seldom observed in our consultations. Instead, a sociological concept of autonomy based on a relational process involving all protagonists and enabling a mutual adjustment of actions might be better suited to generating a reflective approach to practice. From that perspective, respecting women’s and couples’ autonomy would be less about maintaining a neutral and non-directive attitude, and more about facilitating the expression of their reflective capacities.
The frame analysis provides insights into the constraints that govern interactions. The way protagonists define the situation as well as their expectations reflect past experiences, which are themselves anchored in social structures and practices. For example, the medico-expertise frame is rooted in the ‘therapeutic modernity’ era: PND practitioners have acquired a specific conception of their mission and have developed routines for their consultations – based on their training, their experience, and on a certain number of rules – and have learned to adapt them to suit individual situations. By contrast, the medical authority frame is rooted in the “clinical tradition”.2 Women who engage in that frame tend to defer to its representative and expect to be reassured, or at least advised on their particular situation. “People therefore must manage the plurality of frames, as well as the eventual ruptures of frames that rise in the course of interactions”.30 Being cognisant of this plurality might encourage practitioners to consider women’s viewpoints, and thus promote interactions. It might also result in making the medico-expertise frame intelligible to women, for example, by making it clear that the information they are about to receive is not specific to their situation but is given to all women, and is designed to “train” them in scientific reasoning to help them make a decision.
It would seem hazardous to compare PND practices in England and France on the basis of our data due to the small number of observations and the diversity of the populations. Moreover, the way pregnancy monitoring is organised is different. It appears to be more delineated in England, thus making it possible to limit the number of acts and, therefore, better control spending. This can also be seen in the legal framework governing practices, with regard to the thresholds at which samples may be taken (higher in England) and in the lower number of ultrasound examinations that are recommended. This observation is reminiscent of public fund management practices found in England since the 1980s and the way in which the new rules and procedures introduced by the State have durably guided the behaviour of health actors.32In France, pregnancy monitoring is more flexible, and although PND practices have been subjected to greater regulation since the 1990s, practitioners retain relative autonomy.33
As we observed, in England these differences lead to the virtual absence of recourse to the religious authority frame, because women who are engaged in this frame and refuse to take the risk of miscarriage, generally do not move on to the second decision-action sequence that constitutes the subject of this study. By the same reasoning, due to this filtering of the care pathway, women who are not opposed to a sample being taken tend to be better informed about their situation and more familiar with the medico-scientific logic than the women observed in France.
Yet more subtle differences can also be observed. English practitioners seem to more frequently adopt attitudes of neutrality and non-directiveness and demonstrate a stronger attachment to the medico-scientific expertise frame, whereas French practitioners do not hesitate to distance themselves from it. English practitioners also appear to be more involved in the mission to educate women – something that is especially evident in the level of detail in the information provided that is greater than in consultations in France. Here we find the expression of a form of incorporation of the tools that regulate practices and provide guidelines.32 This avenue of interpretation nevertheless needs to be verified in a later study, as these differences might also be attributed to practitioners adapting to women’s individual characteristics and might reflect the work culture in operation in the establishments in which we conducted our observations.