title: International differences in the evaluation of conditions for newborn bloodspot screening: a review of scientific literature and policy documents.
abstract: Despite international adoption of newborn bloodspot screening (DBS), no two countries' screening programs are the same. This article aims to understand what factors influence DBS decision-making criteria and how conditions are assessed against them. In doing so, it offers unique insights into the international landscape of DBS. A systematic review on DBS criteria in scientific literature was first undertaken. Through this, five topics were identified for consideration when analyzing DBS decision-making. Using these five topics as a template, a side-by-side comparison was conducted on DBS in policy documents of eight countries. Programs are using different approaches to explore the same policy issues, including: the beneficiary of DBS, definition of criteria, the way conditions are assessed, level of evidence required, and recommendations after assessment. These differences have the potential to result in increased disparity across DBS internationally. Ultimately, governments need to decide on their role and develop an approach to DBS decision-making in line with this role. The analyses presented in this article highlight that despite programs' commonalities, no one 'DBS decision-making solution' exists. Understanding the different approaches to decision-making within the literature and policy settings, provides an objective starting point for structured decision-making approaches for DBS programs.
authors.affiliation: Department of Clinical Genetics, Section Community Genetics and EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands. m.jansen5@vumc.nl.|Department of Genetics and Cell Biology, Institute for Public Health Genomics, School for Oncology and Developmental Biology (GROW), Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands. m.jansen5@vumc.nl.
authors.forename: Marleen E
authors.identifier: http://orcid.org/0000-0002-7847-683X
authors.initials: ME
authors.lastname: Jansen
authors.affiliation: Department of Health, Screening Policy Section, Office of Population Health Genomics, Government of Western Australia, Perth, Australia.
authors.forename: Selina C
authors.initials: SC
authors.lastname: Metternick-Jones
authors.affiliation: Department of Health, Screening Policy Section, Office of Population Health Genomics, Government of Western Australia, Perth, Australia.
authors.forename: Karla J
authors.initials: KJ
authors.lastname: Lister
mesh_terms: D003657:Decision Making; D005820:Genetic Testing / Q000331:legislation & jurisprudence* / Q000639:trends; D006291:Health Policy / Q000331:legislation & jurisprudence* / Q000639:trends; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000331:legislation & jurisprudence / Q000379:methods*