Journal Article

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

S M P J Jans, L Henneman, A de Jonge, C G van El, L H van Tuyl, M C Cornel and A L M Lagro-Janssen

in Family Practice

Volume 30, issue 5, pages 604-610
Published in print October 2013 | ISSN: 0263-2136
Published online April 2013 | e-ISSN: 1460-2229 | DOI: http://dx.doi.org/10.1093/fampra/cmt019

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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.

Keywords: Barriers; carrier screening; ethnicity; haemoglobinopathies; primary care.

Journal Article.  5075 words. 

Subjects: Primary Care

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