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Public Attitudes Toward Expanded Newborn Screening.
1Clemson University School of Nursing, Clemson, SC, USA.
Journal of Pediatric Nursing
|October 17, 2017
Summary
Public understanding of newborn screening (NBS) is limited, yet support for expanded screening exists. Enhanced education is crucial for informed public acceptance of new NBS technologies and genomic screening.
Area of Science:
- Genetics
- Public Health
- Pediatrics
Background:
- Newborn screening (NBS) is evolving with technological advancements and expanded disorder panels.
- Limited research exists on public knowledge and understanding of NBS.
Purpose of the Study:
- Assess public knowledge of NBS disorders and procedures.
- Evaluate perceived educational needs and preferred information delivery methods for NBS.
- Understand public attitudes towards screening for severe, untreatable conditions.
Main Methods:
- Preliminary descriptive study utilizing surveys.
- Eighty-eight participants queried on NBS knowledge, education preferences, and opinions on screening for severe disorders like lysosomal storage diseases (LSD).
Main Results:
- Most participants lacked general NBS knowledge but supported expanded screening for severe conditions.
- Enthusiasm for expanded NBS was high, though more educated participants expressed caution about costs.
- Public generally supports screening for severe, even untreatable, disorders.
Conclusions:
- Public understanding of NBS requires enhancement through targeted educational efforts.
- Further research on public acceptance of expanded NBS is essential.
- Patient-centered care in genomic screening necessitates improved public education on NBS.