Evidence · Systematic review or meta-analysis
Principles of Genomic Newborn Screening Programs: A Systematic Review.
- Communicating with families
- Ethics
- Families and professional practice
- Inborn errors of metabolism
- Medical
- Metabolic, endocrine and renal
- Nursing
Summary
This systematic review of 36 articles examines evidence from genomic newborn screening pilot projects and related research, addressing interest and uptake, disease and gene selection, validity and utility, and ethical, legal and social implications. Findings highlight the need for equitable access, appropriate educational materials and informed, flexible consent, with gene selection being highly variable across studies. It notes tensions between expanding screening and the complexity of consent, and the risk of reduced uptake of traditional newborn screening. Knowledge gaps include views of diverse populations, health system capability and health economics.
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- Licence:
- Open (Creative Commons)
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