Families dealing with the uncertainty of genetic disorders: the case of Neurofibromatosis Type 1.

2.50
Hdl Handle:
http://hdl.handle.net/11287/596931
Title:
Families dealing with the uncertainty of genetic disorders: the case of Neurofibromatosis Type 1.
Authors:
Carrieri, D; Farrimond, H; Kelly, S; Turnpenny, Peter D.
Abstract:
Some scholars contend that genetic medicine is transforming the experience of illness and the social category of the family - bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However, research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with Neurofibromatosis Type 1 (NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined as a 'condition without parameters'. These characteristics make NF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow us to investigate the interrelation of individual and familial constructions of the uncertainty of NF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies.
Citation:
Families dealing with the uncertainty of genetic disorders: the case of Neurofibromatosis Type 1. 2016 Jun;38(5):753-67. Sociol Health Illn
Publisher:
Wiley
Journal:
Sociology of health & illness
Issue Date:
11-Feb-2016
URI:
http://hdl.handle.net/11287/596931
DOI:
10.1111/1467-9566.12401
PubMed ID:
26864895
Additional Links:
http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12401/abstract
Type:
Journal Article
Language:
en
ISSN:
1467-9566
Appears in Collections:
Clinical Genetics (Peninsula Genetics); 2016 RD&E publications

Full metadata record

DC FieldValue Language
dc.contributor.authorCarrieri, Den
dc.contributor.authorFarrimond, Hen
dc.contributor.authorKelly, Sen
dc.contributor.authorTurnpenny, Peter D.en
dc.date.accessioned2016-02-22T15:34:16Zen
dc.date.available2016-02-22T15:34:16Zen
dc.date.issued2016-02-11en
dc.identifier.citationFamilies dealing with the uncertainty of genetic disorders: the case of Neurofibromatosis Type 1. 2016 Jun;38(5):753-67. Sociol Health Illnen
dc.identifier.issn1467-9566en
dc.identifier.pmid26864895en
dc.identifier.doi10.1111/1467-9566.12401en
dc.identifier.urihttp://hdl.handle.net/11287/596931en
dc.description.abstractSome scholars contend that genetic medicine is transforming the experience of illness and the social category of the family - bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However, research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with Neurofibromatosis Type 1 (NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined as a 'condition without parameters'. These characteristics make NF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow us to investigate the interrelation of individual and familial constructions of the uncertainty of NF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies.en
dc.languageENGen
dc.language.isoenen
dc.publisherWileyen
dc.relation.urlhttp://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12401/abstracten
dc.rightsArchived with thanks to Sociology of health & illnessen
dc.subjectWessex Classification Subject Headings::Oncology. Pathology.::Geneticsen
dc.titleFamilies dealing with the uncertainty of genetic disorders: the case of Neurofibromatosis Type 1.en
dc.typeJournal Articleen
dc.identifier.journalSociology of health & illnessen
dc.type.versionIn press (epub ahead of print)en

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