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

Date

2016-08-03

Advisors

Journal Title

Journal ISSN

ISSN

1363-4593

Volume Title

Publisher

Sage

Type

Article

Peer reviewed

Yes

Abstract

The moral turn within sociology suggests 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 paper 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.

Description

Keywords

ethnic minorities, genetics, narrative, sickle cell, thalassaemia, Paul Ricoeur, sociology

Citation

Dyson, S.M., Ahmad, W.I.U. and Atkin, K. (2016/2017) Narrative as re-fusion: making sense and value from sickle cell and thalassaemia trait. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine,20 (6), pp. 616-634

Rights

Research Institute

Institute for Allied Health Sciences Research