A principle of autonomy difficult to implement
When a risk is identified, practitioners must provide the woman/couple
with “information on the nature of the suspected affection, on the
means of detecting it and possibilities for prevention, treatment, or
suitable care for the foetus or child born”. 11,12The aim is to enable women to make autonomous decisions and informed
reproductive choices. Yet information about Down syndrome is often
absent from the consultations.13 Research on women’s
decision-making emphasises the diversity of women’s beliefs about
ethics,14 their interpretation of informed
choice,15 and their attitudes about knowledge
sources.16 Evidence also suggests that some women view
choice as an individual right, while others prefer relying on
practitioners’ advice.17,18 Other studies indicate
that it is often difficult for practitioners to comply with neutrality
and non-directiveness.19
Practitioners admit to being directive in certain
situations,17,20 as they make assumptions on women’s
scientific and linguistic skills, their religious beliefs, and knowledge
of abortion legislation.21,22 Direct observations of
counselling practices demonstrate the complexity of women and
practitioners’ interactions, which is largely caused by differing
interpretations of the concept of risk.23 Schwennesen
and Koch observed that the act of « doing good care », by minimising
emotional suffering and supporting a pregnant woman’s ability to make
meaningful choices, is difficult to reconcile with the ideal of
non-directiveness. 24
The difficulty to adopt the recommended non-directive approach poses
important questions. On one hand, it might reveal the persistence of a
form of paternalism in the relationship between women and practitioners,
with the latter possibly struggling to accept women’s autonomy in
decision-making. On the other hand, it might reflect a conception of
autonomy that is too restrictive to take account of the relational
dynamics taking place in clinical consultations. To address these
questions, it is essential to examine what the interactions between
women and practitioners consist of by suspending, during the analytical
process, any normative reference to autonomy and non-directiveness.
In this article, we focus on the second sequence of decision-action in
PND pathways, where women identified as being “at risk” are sent to
referral centres where they must decide whether to continue with the
investigations or not.
In line with pragmatic sociology, using Frame
Analysis,25 we first describe and categorise the
interactions that take place during the consultations, the way women and
practitioners engage and adjust to these interactions, as well as the
conditions that facilitate or hinder the protagonists’ expression of
their reflective capacities. This then lead us to consider and challenge
the philosophical conception of autonomy, and propose, instead, a
sociological conception of autonomy that is both relational and
processual, and which we discuss in relation to the organisation of PDN
practices in England and France.