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.