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

Area of Science:

• Reproductive Medicine
• Genetics
• Bioethics

Background:

• Expanded genomic testing in pregnancy is becoming more common.
• Understanding parental perspectives on these tests is vital for informed decision-making.
• Reproductive autonomy is a key ethical consideration in prenatal testing.

Purpose of the Study:

• To explore parents' views on expanded prenatal genomic testing.
• To understand the implications of such testing for reproductive autonomy.
• To identify factors influencing autonomous decision-making during pregnancy.

Main Methods:

• Four dialogue group workshops were conducted with 33 Australian parents.
• A fictional prenatal testing scenario was used to facilitate discussion.
• Qualitative analysis identified key themes related to autonomy and decision-making.

Main Results:

• Parents identified barriers to autonomous choice and the need for support.
• Stress and social expectations impacted their reproductive autonomy.
• While valuing genomic information, parents struggled to comprehend its complexity.
• Reliance on healthcare professionals for interpretation was noted, alongside resource constraints.

Conclusions:

• Reproductive autonomy is both individual and relational, requiring supportive health systems.
• Effective decision-making necessitates a framework beyond mere information provision.
• Genuinely autonomous choices require conditions that support values-based decision-making in prenatal genomic testing.