The United Kingdom’s newborn blood spot screening program may undergo expansion, with recent research highlighting significant parental support alongside areas needing improvement.
A comprehensive review assessed the acceptability of newborn blood spot screening and genetic sequencing among parents and carers. Researchers meticulously analyzed 25 studies, predominantly from North America, focusing on high-income countries since 2013.
Widespread Support with Minor Concerns
Findings reveal that the majority of parents endorse the screening programs, recognizing their role in early diagnosis and optimal care for rare conditions. While support is robust, some parents experienced anxiety related to the screening process and the information provided.
Consent and Information Timing Critical
Participants generally felt well-informed, yet emphasized the need for better timing in delivering information. Consent procedures for genetic sequencing require greater clarity, and enhanced post-screening support is necessary to address parental concerns effectively.
• Enhanced consent processes can alleviate parental anxiety.
• Timing of information delivery impacts parent satisfaction.
• Greater post-screening support is essential for genetic sequencing acceptance.
Research underscores the favorable reception of expanding newborn screening to include additional conditions, though highlights the necessity for systematic improvements in consent and support frameworks. The limited use of theoretical frameworks in existing studies suggests a need for more structured investigations into parental acceptability.
The review points out that over-representation of North American studies may limit global applicability, especially in regions with different healthcare systems and screening practices. Additionally, the scarcity of research involving diverse socioeconomic and ethnic groups indicates a gap in understanding varied parental perspectives.
Implementing expanded newborn screening programs should consider these insights to optimize parental acceptance and support. Tailoring consent procedures and information dissemination to better meet parents’ needs will enhance the effectiveness and acceptance of these public health initiatives.
Future research must address the identified gaps by including more diverse populations and employing theoretical frameworks to guide the evaluation of acceptability. By doing so, policymakers and healthcare providers can ensure that newborn screening programs are both effective and aligned with parental expectations and experiences.
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