Literature DB >> 27491942

Narrative as re-fusion: Making sense and value from sickle cell and thalassaemia trait.

Simon M Dyson1, Waqar Iu Ahmad2, Karl Atkin3.   

Abstract

The moral turn within sociology suggests that we need to be attentive to values and have a rapprochement with philosophy. The study of illness narratives is one area of sociology that has consistently addressed itself to moral domains but has tended to focus on stories of living with genetic or chronic illness per se rather than liminal states such as genetic traits. This article takes the case of genetic carriers within racialized minority groups, namely, those with sickle cell or thalassaemia trait, and takes seriously the notion that their narratives are ethical practices. In line with the work of Paul Ricoeur, such storied practices are found to link embodiment, social relationships with significant others and wider socio-cultural and socio-political relations. At the same time, such practices are about embodying values. These narratives may be considered as practices that re-fuse what genetic counselling has de-fused, in order to make sense of a life in its entirety and to strive ethically and collectively towards preferred social realities.

Keywords:  ethnic minorities; genetics; narrative; sickle cell; thalassaemia

Year:  2016        PMID: 27491942     DOI: 10.1177/1363459316660861

Source DB:  PubMed          Journal:  Health (London)        ISSN: 1363-4593


  3 in total

Review 1.  Incidental Findings of Sickle Cell Trait From an Everyday Diabetes Test: Should General Health Care Providers and Testing Centers Report, Retest, or Refer?

Authors:  Anna Cronin de Chavez; Karl M Atkin; Fiona Babbington; Maria J Berghs; Simon M Dyson; Adrian Miller; Donald C Whitelaw
Journal:  Clin Diabetes       Date:  2020-01

2.  Biographical accounts of the impact of fatigue in young people with sickle cell disease.

Authors:  Brenda Agyeiwaa Poku; Alison Pilnick
Journal:  Sociol Health Illn       Date:  2022-04-29

3.  Transitions to adulthood: self-governance and disciplining in the making of patient citizens.

Authors:  Alicia Renedo; Sam Miles; Cicely Marston
Journal:  Sociol Health Illn       Date:  2019-10-30
  3 in total

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