Information, Access, and Stress: Ethical Insights From Parents’ Views on Autonomy in Expanded Prenatal Testing

This study explores parents' perspectives on expanded genomic testing in pregnancy and its implications for reproductive autonomy. We conducted four workshops using dialogue group methodology and involving thirty-three Australian parents with recent experience of pregnancy. Participants used a fictional scenario involving prenatal testing to reflect on their own experiences and views. Four interconnected themes were identified: barriers to autonomous testing and choice, the need for guidance and support through the decision-making process, the impact of stress and social expectations on reproductive autonomy, and the importance of information to reproductive autonomy. Participants valued genomic information to help in decision-making and to give reassurance but struggled to comprehend the nature of the information that expanded testing could provide. They relied on trusted healthcare professionals to interpret the meaning of test results but recognized the reality of constraints on healthcare resources. Our findings show that reproductive autonomy in this context is both individual and relational and requires health systems that support values-based decision-making. In an era of expanding prenatal genomic testing, our study highlights the need for a framework for reproductive autonomy that goes beyond information provision, to provide the conditions necessary for genuinely autonomous decision-making.