L'autonomie reproductive des femmes et leur prise de décision vis-à-vis du Test Prénatal Non-Invasif : étude comparative Liban-Québec

Non Invasive Prenatal Testing (NIPT) based on the detection of cell free fetal DNA in maternal blood has transformed the landscape of prenatal care by offering clinical benefits over existing prenatal screening tests. Requiring a simple blood test, NIPT is non-invasive and thus carries no risk of pregnancy loss and detects fetal aneuploidies such as trisomy 21, 18 and 13 with high specificity and sensitivity as early as the 10th week of gestation. NIPT has expanded rapidly and is currently commercially available in most of the world. As NIPT spreads globally, culturally sensitive and ethically sound implementation will require policies that take into consideration the social and cultural context of prenatal testing decisions. In a western context, the main ethical argument for providing access and public funding of prenatal tests is the promotion of reproductive autonomy, by enabling pregnant women and couples to access information about the fetus in order to choose a certain course of action for pregnancy management: either to continue the pregnancy and to prepare for the birth of the future child or to terminate the pregnancy. In this thesis, we aim to explore how the framework of reproductive autonomy is operationalised in a non-Western cultural context and what are the factors that come into play when pregnant women and couples accept or decline NIPT testing. Therefore, we used Quebec, Canada and Beirut, Lebanon as case studies to explore what ethical considerations related to reproductive autonomy should guide the implementation of the test in various cultural contexts. To answer this question, we conducted a qualitative study based on semi-structured interviews to 1) explore the perceptions, values and preferences of pregnant women and their partners about NIPT and 2) to examine how these perceptions, values and preferences influence reproductive autonomy and NIPT decision-making in these two cultural settings, Lebanon and Quebec. The data analysis showed that all participants in Quebec and Lebanon considered NIPT to be a positive advance for prenatal testing technology. However, when comparing NIPT decision-making processes we identified several significant differences and some important similarities with respect to the different factors deemed to influence couples’ and pregnant women’s NIPT decision-making. Among others, the presence of the technology itself, the personal beliefs or views of couples and pregnant women on abortion and pregnancy management, the relationship with the partner and the healthcare professional and the financial resources, including NIPT cost and its coverage by the healthcare system or insurance companies. Decision-making surrounding NIPT is a complex process requiring a consideration of the different elements that come into play to shape such decision. Therefore, an understanding of the socio-cultural context and the diverse factors that play a role in the decision-making process is crucial to preserve women’s and couples’ contextual reproductive autonomy and to guide any clinical or policy implementation decisions.

Keyphrases: Perspectives culturelles, Étude comparative, Culturally appropriate care, Disability rights, Informed consent, Healthcare professional, Pregnancy, Couples