Maternal perspectives on sharing newborn genomic data

Sharing clinical and genomic data is essential for accurate variant interpretation, the advancement of genomic research, and supporting couples planning to conceive. This cross-sectional study examined attitudes toward newborn genomic data sharing in a cohort of peripartum mothers in Slovenia. Among the 1111 respondents, 84% expressed willingness to share anonymized genomic data to benefit other couples and to advance novel diagnostic and preventive strategies. Support was reported by 87% for clinical applications and by 59% for research purposes, while 74% favored international data sharing. Conversely, pronounced hesitation emerged regarding disclosure of identifiable data for non-medical uses, particularly involving insurance providers (82%). Willingness to share genomic data was positively associated with higher educational attainment (p < 0.001), higher levels of genetic knowledge (p < 0.001), and prior experience with genetic testing (p = 0.013). These results emphasize the role of public understanding and trust in the ethical integration of genomic newborn screening initiatives.