title: 'A morass of considerations': exploring attitudes towards ethnicity-based haemoglobinopathy-carrier screening in primary care.
abstract: BACKGROUND
  The Netherlands does not have a national haemoglobinopathy (HbP)-carrier screening programme aimed at facilitating informed reproductive choice. HbP-carrier testing for those at risk is at best offered on the basis of anaemia. Registration of ethnicity has proved controversial and may complicate the introduction of a screening programme if based on ethnicity. However, other factors may also play a role.
  
  
  OBJECTIVE
  To explore perceived barriers and attitudes among GPs and midwives regarding the registration of ethnicity and ethnicity-based HbP-carrier screening.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors: Midwifery Science, EMGO Institute for Health and Care Research.
authors: S M P J
authors: SM
authors: Jans
authors: L
authors: L
authors: Henneman
authors: A
authors: A
authors: de Jonge
authors: C G
authors: CG
authors: van El
authors: L H
authors: LH
authors: van Tuyl
authors: M C
authors: MC
authors: Cornel
authors: A L M
authors: AL
authors: Lagro-Janssen
mesh_terms: D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D057286:Electronic Health Records / Q000941:ethics; D005260:Female; D017144:Focus Groups; D058006:General Practice; D005820:Genetic Testing / Q000191:economics / Q000941:ethics; D006453:Hemoglobinopathies / Q000175:diagnosis / Q000208:ethnology* / Q000235:genetics; D006579:Heterozygote; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000941:ethics; D008875:Middle Aged; D008880:Midwifery; D009426:Netherlands; D011320:Primary Health Care; D055815:Young Adult
keywords: Barriers; carrier screening; ethnicity; haemoglobinopathies; primary care.
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