Literature DB >> 18222583

Managing self-responsibility through other-oriented blame: family accounts of genetic testing.

Michael Arribas-Ayllon1, Srikant Sarangi, Angus Clarke.   

Abstract

'Genetic responsibility' has emerged as a key notion for understanding how genetic risk reshapes patterns of choice, identification and obligation within families. Where previous research has examined the difficulties of managing responsibility for genetic testing and disclosure of the testing process and results, there is little work that examines these themes when accounts of genetic responsibility involve blame. In this paper, we explore how forms of responsible selfhood are managed through accounts of other-oriented blame in the family sphere. Interviews (n=20) were conducted in the United Kingdom with parents whose genetic condition may have consequences for other family members. Using rhetorical discourse analysis we show that a key discursive resource for managing blame and responsibility is the use of contrast -- via constructed dialogue, character/event work and extreme case formulation -- to either endorse or contest versions of responsible/moral selfhood. We conclude that claims of personal responsibility manifest in open disclosure of genetic information often entail the blaming of others within the family. By extension, blaming others has moral and relational significance when competing views of genetic responsibility are at stake and when genetic understandings are incongruent.

Mesh:

Year:  2008        PMID: 18222583     DOI: 10.1016/j.socscimed.2007.12.022

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  11 in total

1.  Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease.

Authors:  Álvaro Mendes; Milena Paneque; Angus Clarke; Jorge Sequeiros
Journal:  Eur J Hum Genet       Date:  2018-12-20       Impact factor: 4.246

2.  Grandmothers as gems of genetic wisdom: exploring South African traditional beliefs about the causes of childhood genetic disorders.

Authors:  Claire Penn; Jennifer Watermeyer; Carol MacDonald; Colleen Moabelo
Journal:  J Genet Couns       Date:  2009-09-25       Impact factor: 2.537

3.  Enacting genetic responsibility: experiences of mothers who carry the fragile X gene.

Authors:  Kelly Raspberry; Debra Skinner
Journal:  Sociol Health Illn       Date:  2010-11-05

4.  Accounting for accountability: a discourse analysis of psychiatric nurses' experience of a patient suicide.

Authors:  Maggie Robertson; Brodie Paterson; Billy Lauder; Rosemary Fenton; John Gavin
Journal:  Open Nurs J       Date:  2010-01-27

5.  Professional ambivalence: accounts of ethical practice in childhood genetic testing.

Authors:  Michael Arribas-Ayllon; Srikant Sarangi; Angus Clarke
Journal:  J Genet Couns       Date:  2009-02-10       Impact factor: 2.537

6.  Are Indian parents of children with Down syndrome engaged in the blame game?

Authors:  Mamta N Muranjan; Sweta R Budyal; Henal R Shah
Journal:  Indian J Pediatr       Date:  2012-10-19       Impact factor: 1.967

7.  Impact of numeracy preferences on information needs for genome sequencing results.

Authors:  Richard D Albrechtsen; Melody S Goodman; Jemar R Bather; Kimberly A Kaphingst
Journal:  Patient Educ Couns       Date:  2020-09-25

8.  The Diversity of Responsibility: The Value of Explication and Pluralization.

Authors:  Silke Schicktanz; Mark Schweda
Journal:  Med Stud       Date:  2011-12-06

9.  Identity, community and care in online accounts of hereditary colorectal cancer syndrome.

Authors:  Emily Ross; Tineke Broer; Anne Kerr; Sarah Cunningham-Burley
Journal:  New Genet Soc       Date:  2018-05-02

10.  Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan.

Authors:  Zainab Afshan Sheikh; Anja M B Jensen
Journal:  Soc Sci Med       Date:  2019-03-19       Impact factor: 4.634

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