Neonatal screening and beyond
Objectives
To explore the historical backgrounds for not implementing such an ethnicity-based screening program until now and to unravel possible deep-seated minority politics including any possible legal restrictions.Research questions
1. Why have Dutch public health authorities been reserved in formulating formal recommendations for ethnicity-based preconception or antenatal testing of asymptomatic persons on hereditary hemoglobinopathies (deliberately or without knowing since their reservation may have originated from other factors, eg underdeveloped technologies, cost-effectiveness or negative public opinions), and in what way has the ethnic nature of this issue been causing their reserves?
2. What are the ideas of primary care providers (GPs and midwives) about ethnicity based preconception and antenatal screening in their daily practice, and how do they see their own possibilities regarding this issue?
3. Would it be possible to implement the ideas of GPs and midwives about ethnicity based preconception antenatal screening for hereditary hemoglobinopathies in their daily practice in accordance with the other participants in the system: opinion leaders, stakeholders and the target population?