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Journal Articles European Journal of Human Genetics Year : 2021

Regulatory landscape of providing information on newborn screening to parents across Europe

1 First Faculty of Medicine Charles University [Prague]
2 RIVM - National Institute for Public Health and the Environment [Bilthoven]
3 ISNSO - International Society for Neonatal Screening Office [Bilthoven, The Netherlands]
4 Sheffield Children's NHS Foundation Trust
5 Mater Dei Hospital [Malta]
6 HCL - Hospices Civils de Lyon
7 University Children’s Hospital Zurich
8 University Hospital Centre Zagreb
9 Institute of Child Health [Athens, Greece]
10 UMCL - University Medical Centre Ljubljana [Ljubljana, Slovenia]
11 Statens Serum Institute [Copenhagen]
12 UMB - Matej Bel University
13 CUH-BB - Children's University Hospital [Banska Bystrica, Slovakia]
14 Azienda Ospedaliero Universitaria A. Meyer [Firenze, Italy]
15 CCUH - Children's Clinical University Hospital [Riga, Latvia]
16 NIMCH - National Institute for Mother & Child Health [Bucharest, Romania]
17 Bavarian Health and Food Safety Authority [Oberschleißheim, Germany]
18 NCSHO - National Children's Specialized Hospital "Okhmatdyt" [Kiev, Ukraine]
19 National Research Institute of Mother and Child [Warsaw, Poland]
20 Oslo University Hospital [Oslo]
21 University of Szeged [Szeged]
22 Tartu University Hospital [Tartu, Estonia]
23 SGOP - Scientific centre of Gynaecology, Obstetrics and Perinatology [Almaty, Kazakhstan]
24 Vilnius University [Vilnius]
25 INSA - Instituto Nacional de Saùde Dr Ricardo Jorge [Portugal]
26 Limassol General Hospital
27 KUH - Karolinska University Hospital [Solna, Sweden]
28 Medizinische Universität Wien = Medical University of Vienna
P. Borde
  • Function : Author


Newborn screening (NBS) is an important part of public healthcare systems in many countries. The provision of information to parents about NBS is now recognised as an integral part of the screening process. Informing parents on all aspects of screening helps to achieve the benefits, promote trust and foster support for NBS. Therefore, policies and guidelines should exist to govern how the information about NBS is provided to parents, taking into account evidence-based best practices. The purpose of our survey was to explore whether any legally binding provisions, guidelines or recommendations existed pertaining to the provision of information about NBS to parents across Europe. Questions were designed to determine the regulatory process of when, by whom and how parents should be informed about screening. Twenty-seven countries participated in the survey. The results indicated that most countries had some sort of legal framework or guidelines for the provision of information to parents. However, only 37% indicated that the provision of information was required prenatally. The majority of countries were verbally informing parents with the aid of written materials postnatally, just prior to sample collection. Information was provided by a neonatologist, midwife or nurse. A website dedicated to NBS was available for 67% of countries and 89% had written materials about NBS for parents. The survey showed that there is a lack of harmonisation among European countries in the provision of information about NBS and emphasised the need for more comprehensive guidelines at the European level.
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Dates and versions

inserm-03274425 , version 1 (30-06-2021)



V. Franková, R. O. Driscoll, M. E. Jansen, J. G. Loeber, V. Kožich, et al.. Regulatory landscape of providing information on newborn screening to parents across Europe. European Journal of Human Genetics, 2021, 29 (1), pp.67-78. ⟨10.1038/s41431-020-00716-6⟩. ⟨inserm-03274425⟩
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