Parental attitudes toward ethical and social issues surrounding the expansion of newborn screening using new...

Area of Science:

• Genetics and Public Health
• Pediatric Medicine
• Bioethics

Background:

• Newborn screening (NBS) is a public health program for early detection of treatable congenital disorders.
• Parental understanding and attitudes towards NBS, particularly for conditions without immediate treatment or with late onset, are not fully understood.

Purpose of the Study:

• To assess parental knowledge and attitudes regarding newborn screening (NBS).
• To explore parent perspectives on NBS for untreatable conditions, late-onset disorders, and informed consent.
• To identify discrepancies between parent views and professional consensus on NBS policies.

Main Methods:

• Seventeen qualitative focus groups were conducted with mothers of young children across four US states.
• Participants were mothers of children 10 years old or younger.

Main Results:

• Most mothers did not recall receiving NBS information and desired it prenatally.
• A majority found the 'informed dissent' process adequate if informed prior to delivery.
• Support was high for NBS of treatable infant conditions, but divided for untreatable or late-onset disorders.

Conclusions:

• Parental attitudes on NBS timing, informed consent, and screening for untreatable/late-onset conditions differ from many professional viewpoints.
• Further research into parental opinions on expanded NBS and their inclusion in policy development is crucial.