‘A morass of considerations’: exploring attitudes towards ethnicity-based haemoglobinopathy-carrier screening in primary care
Haemoglobinopathies (HbPs), such as sickle cell disease and thalassaemia, are autosomal recessive disorders with severe anaemia, variable but lifelong morbidity and a shortened lifespan due to multi-organ ischaemic damage. HbPs occur more frequently in areas such as Africa, the Mediterranean area, the Middle East and South-East Asia. Due to migration and population admixture, HbPs are now also common in other countries. Carrier prevalence amongst the general population in Northern and Western Europe varies between 0.29% in Finland and 2.45% in France. However, when ethnicity is taken into account, carrier prevalence may vary up to 40%,4 making ethnicity an important determinant of risk. Carrier couples have a one-in-four chance in each pregnancy of giving birth to an affected child. Carrier screening would allow the identification of these couples and give them an opportunity to make informed reproductive decisions, preferably before conception. The Netherlands, as many other countries in Europe, does not have a national HbP-carrier screening programme. Although national guidelines advise HbP-carrier testing in cases of (unresolved) anaemia or a positive family history, health professionals such as GPs and midwives rarely carry this out. Being part of primary care, midwives and GPs are in a good position to provide easy access to preconception care. The vast majority of pregnant women (78%) start their maternity care in a primary care setting. Preconception or early antenatal HbPcarrier testing would facilitate reproductive choice for (prospective) parents. Although preconception care has been implemented by midwives and is also gaining attention from GPs in the Netherlands, it is hindered by a lack of financial support. Preconception care is therefore only available to those with sufficient financial means or an extensive insurance policy.
This study’s objective was to gain more insight into the present attitudes towards the documentation of ethnicity in clinical records by GPs and midwives related to everyday practice, in particular to identify risk groups for preconceptional or antenatal HbP-carrier testing and to explore perceived barriers if ethnicity-based HbP-carrier screening is implemented in the future.
Six focus groups in Dutch primary care, with a total of 37 GPs (n = 9) and midwives (n = 28) were conducted, transcribed and content analysed using Atlas-ti.
Both GPs and midwives struggled with correctly identifying ethnicities at risk for HbP. Ethical concerns regarding privacy seemed to originate from World War II experiences, when ethnic and religious registration facilitated deportation of Jewish citizens, coupled with the political climate at the time focus groups were held. Some respondents thought the ethnicity question might undermine the relationship with their clients. Software programmes prevented GPs from registering ethnicity of patients at risk. Financial implications for patients were also a concern. Despite this, respondents seemed positive about screening and were familiar with identifying ethnicity and used this for individual patient care.
Although health professionals are generally positive about screening, ethical, financial and practical issues surrounding ethnicity-based HbP-carrier screening need to be clarified before introducing such a programme. Primary care professionals can be targeted through professional organizations but they need national policy support.