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.