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

Abstract

Objectives. In 2007 neonatal screening (NNS) was expanded to include screening for sickle cell disease (SCD) and beta-thalassaemia. Up until that year no formal recommendations for haemoglobinopathy (carrier) screening existed in the Netherlands. Although it has been subject to debate in the past, preconceptional and prenatal haemoglobinopathy carrier screening are not part of routine healthcare in the Netherlands. This study aimed to explore the decision-making process of the past: why was the introduction of a screening programme for haemoglobinopathy considered to be untimely, and did ethnicity play a role given the history in other countries surrounding the introduction of haemoglobinopathy screening?Design. A witness seminar was organised, inviting key figures to discuss the decision-making process concerning haemoglobinopathy screening in the Netherlands, thereby adding new perspectives on past events. The transcript was content-analysed.Results. The subject of haemoglobinopathy screening first appeared in the 1970s. As opposed to a long history of neglect of African-American health in the United States, the heritage of the Second World War influenced the decision-making process in the Netherlands. As a consequence, registration of ethnicity surfaced as an impeding factor. However, overall, official Dutch screening policy was restrained regarding reproductive issues caused by fear of eugenics. In the 1990s haemoglobinopathy screening was found to be ‘not opportune’ due to low prevalence, lack of knowledge and fear of stigmatisation. Currently the registration of ethnicity remains on the political agenda, but still proves to be a sensitive subject.Discussion. Carrier screening in general never appeared high on the policy agenda. Registration of ethnicity remains sensitive caused by the current political climate. Complexities related to carrier screening are a challenge in Dutch healthcare. Whether carrier screening will be considered a valuable complementary strategy in the Netherlands, depends partly on participation of representatives of high-risk groups in policy making.

'A morass of considerations': exploring attitudes towards ethnicity-based haemoglobinopathy-carrier screening in primary care

“…However, the use of ethnicity is problematic in both social and political terms. 17,24 It is interesting to note that none of the participants actually thought of asking patients/clients themselves but mostly interpreted ethnicity from outward characteristics such as appearance and/or surname. Although self-defined ethnicity is favoured by some, 25,26 defining ethnicity is still the subject of ongoing debate.…”

“…11,17 As both ‘ethnicity’ and ‘ancestry’ are shown to be equally complex terms and ethnicity is supported by the literature as a proxy for ancestral or ethnic origin, 18 this term has been chosen to be used in the study. Moreover, this term is most common in areas of health care such as midwifery and obstetrics.…”

“…16 These issues came up as barriers for the introduction of HbP-carrier screening. 11,17 In order to offer equitable health services to all groups in society, health professionals need to be aware of ethnicity-related health needs without the fear of raising issues of discrimination or stigmatization.…”

Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference

“…England, Wales, Scotland, Northern Ireland (Streetly et al , , ), France (Bardakdjian‐Michau et al , ; Couque et al , ), Spain (Manu Pereira & Corrons, ; Cela et al , ) and the Netherlands (Bouva et al , ; Jans et al , ) have established national NBS programmes for SCD. In Belgium, a regional screening programme has operated in Brussels and the surrounding areas since 1994 and in Liège and the surrounding areas since 2002 (Gulbis et al , ).…”

A Global Perspective on Milestones of Care for Children with Sickle Cell Disease

“…Moreover, the recent migration movements of the past decade have further increased the frequency of SCD in areas where it was generally uncommon. In Europe, SCD has become the paradigm of immigration hematology [3] and is now the most prevalent genetic disease in France [4] and the United Kingdom [5] its frequency is steadily rising in many other countries of northern, central and southern Europe [ 10] posing a challenge to health systems. In addition, awareness regarding SCD is increasing in India [11] and in many African countries [12] where the prevalence of the disease is high.…”