A case study of haemoglobinopathy screening in the Netherlands: witnessing the past, lessons for the future

Figures & data

Figure 1.  Network of stakeholders and actors involved.

Table 1. Socio-technical analysis of the past and present with regards to a HbP carrier screening programme.

Attunement with regard to	Period in 1990s	Present time
Technological options	Simple and reliable testing methods.	Well developed testing method for large scale screening.
Facilities and services	Insufficient knowledge amongst healthcare professionals. Insufficient collaboration between healthcare professionals. Unclear who should offer and carry out screening programme. No support from a national public health institution. No guideline for anaemia in existence for midwives. No preconception services available. Neonatal screening limited, screening for HbP is not part of the screening. Health authorities decline formulation of recommendations on the basis of report of the National Investigation into Sickle Cell Anaemia and Thalassaemia.	Insufficient knowledge but willingness is increasing amongst healthcare professionals. Carrier diagnosis is part of the anaemia guideline of the midwives and the GPs. Visible public health authority in place which is able to take responsibility for the coordination of screening programmes (RIVM-Centre for Population Screening). Improving collaboration between healthcare professionals under direction of RIVM and professional organisations, but consensus is still insufficient amongst stakeholders. International consensus that a screening programme should be introduced and carried out by primary care professionals. Endorsement of preconception services by the Dutch Steering Committee on Pregnancy and Childbirth. Preconception services available in most regions, although funding postponed by ministry of health. Neonatal screening SCD implemented.
Demand	Knowledge amongst population at risk is insufficient.	Knowledge is increasing. OSCAR, patient organisation of HbP, in existence, demanding more (screening) services for group at risk. Uptake of preconception services is low. Screening for SCD in Neonatal screening (2007): Carriers are identified>cascade screening as a result of this screening is limited.
Political and cultural acceptability	Parents express worries about finding suitable partners for their daughters therefore screening not acceptable in all cultures. Restrained political attitude on issues of reproductive genetic screening. Disagreements amongst stakeholders. Introduction of law on screening (WBO).	Renewed debate more in favour of screening. Attitude and culture towards screening in general has changed in the Netherlands, e.g., routine prenatal screening for certain abnormalities implemented (once screening for a certain disorder is implemented > easy to add other conditions). More emancipation of groups at risk. Screening acceptable amongst population at risk. Report by the Health Council of the Netherlands endorses preconception care and identifies certain ethnicities as a risk factor for genetic disorders but this is not seen as a basis on which further policy recommendations can be made.