Abstract

Purpose: Ethnic minorities in the UK have a 3-5 times higher risk than white British patients of developing diabetes II, however not all of the HbA1c tests, which are widely used to screen for Type II diabetes, are unsuitable for some ethnic minority groups, such as where haemoglobin variants such as sickle haemoglobin (HbS) are common. Sickle cell trait (SCT) is found in up to 25% of ethnic groups of African, Middle Eastern and southern European heritage and there are 250,000 people with SCT in the UK. This paper will explore if the current HbA1c testing can illuminate mechanisms of structural racism in UK healthcare. Materials and methods: Methods of HbA1c testing and evidence of haemoglobin variant interference with different HbA1c testing systems were examined through literature searching and the USA National Glycohemoglobin Standardization Program database. A policy analysis and literature search explored potential mechanisms of structural racism in the case of HbA1c testing and finally a case study of a patient diagnosed with SCT through a HbA1c test was used to explore ethical dilemmas and possible information needs subsequent to incidental finding of SCT through HbA1c screening. Results: Five methods of testing and over 200 different kinds of machines used to assay HbA1c were found. Only 16% of all systems have been evaluated using robust methods, 57% of those evaluated showed an interference with at least one haemoglobin variant, 51% for HbS. Some systems gave false positives, some false negatives. The extent of use HbA1c machines that are inaccurate for SCT patients in the UK is unknown. No national or international guidance on HbA1c screening for haemoglobin variants was found. An inquiry into sickle cell care, ‘Nobody’s Listening’, found sub-standard care for SCD, low awareness of sickle cell among healthcare professionals and inadequate training and inadequate investment in sickle cell care. Various ethical dilemmas arise through an incidental finding of SCT through an HbA1c test. These include an unanticipated incidental diagnosis of SCT without prior informed consent, communicating and understanding incidence of potential symptoms associated with SCT, not being given timely access to genetic counselling services, how results are appropriately delivered to patients or carers and dealing with stigma and racism that may result as having a SCT status revealed. Conclusion: Screening for diabetes in the UK, and potentially globally, is fraught with lack of information regarding suitability of HbA1c testing systems for patients with haemoglobin variants, therefore potentially providing mechanisms for structural racism in health care for different ethnic groups. There is a need to conduct a thorough assessment of which HbA1c testing systems are in use and if these systems are able to accurately screen for diabetes in patients who may have haemoglobin variants such as HbS. If any systems in use are not able to accurately screen for Type II diabetes in patients with SCT alternative routes for screening should be made available so to not exacerbate health inequalities in ethnic minority groups in the UK. How and when SCT status results are communicated with patients should be carefully considered. The authors do not declare any conflict of interest

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