Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis

Area of Science:

• Genetics
• Public Health
• Psychology

Background:

• Genomic advancements have led to expanded newborn screening (NBS) programs.
• Psychosocial consequences of NBS pose risks to these public health initiatives.
• Understanding these psychosocial impacts is crucial for the success and expansion of NBS.

Purpose of the Study:

• To systematically review and synthesize research on the psychosocial issues associated with NBS.
• To identify risks and potential mitigation strategies for NBS programs.
• To inform future research and clinical practice regarding NBS.

Main Methods:

• Systematic review following PRISMA guidelines.
• Analysis of 92 peer-reviewed research reports published between 2000 and 2020.
• Synthesis of findings related to parental experiences, communication, and the impact of NBS results.

Main Results:

• Parents' knowledge, attitudes, and reactions to NBS results vary.
• Positive NBS results impact parent-child relationships, child development, and family well-being.
• Communication with healthcare providers and genetic counseling are key factors.

Conclusions:

• Psychosocial consequences of unexpected NBS results and genetic information present significant risks to NBS expansion.
• Improved parent education, communication, genetic counseling, and developmental guidance can mitigate these risks.
• Equitable service delivery and inclusive future research are essential for international health equity in NBS.