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Policy Making in Newborn Screening Needs a Structured and Transparent Approach.
Marleen E Jansen1, Karla J Lister2, Henk J van Kranen3
1Section Community Genetics, Department of Clinical Genetics, Amsterdam Public Health Research Institute, Amsterdam, Netherlands; Institute for Public Health Genomics, School for Oncology and Developmental Biology (GROW), Faculty of Health, Medicine, and Life Sciences, Maastricht University, Maastricht, Netherlands.
Frontiers in Public Health
|April 6, 2017
Summary
Newborn bloodspot screening (NBS) policy requires structured approaches for condition selection and robust evaluation. Developing clear guidelines for NBS programs ensures effective implementation and continuous improvement.
Area of Science:
- Public Health
- Genetics
- Health Policy
Background:
- Newborn bloodspot screening (NBS) programs are expanding due to advancements in genetic technologies.
- Historically, NBS expansion has lacked a structured and transparent approach to condition selection.
Purpose of the Study:
- To explore issues pertinent to NBS policy making.
- To analyze NBS policy through the lens of the policy cycle: agenda setting, policy advice, decision, implementation, and evaluation.
Main Methods:
- A literature search was conducted.
- Information on NBS and its policy-making process was gathered and analyzed.
Main Results:
- Two approaches for condition nomination exist: structured horizon scanning and ad hoc processes.
- A robust assessment process based on criteria is supported, but benefit thresholds are undefined.
- An independent, multidisciplinary advisory group is recommended for government recommendations.
- Successful NBS implementation requires a detailed plan and continuous monitoring.
- Advisory committees are crucial for NBS program development, review, and modification.
Conclusions:
- NBS programs face numerous policy challenges regarding condition selection and screening technologies.
- Policy makers must consider these issues when developing NBS policy processes.