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

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    URI
    http://hdl.handle.net/11287/596931
    Author
    Carrieri, D
    Farrimond, H
    Kelly, S
    Turnpenny, Peter D.
    Date
    2016-02-11
    Journal
    Sociology of health & illness
    Type
    Journal Article
    Publisher
    Wiley
    DOI
    10.1111/1467-9566.12401
    Rights
    Archived with thanks to Sociology of health & illness
    Metadata
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    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 URL
    http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12401/abstract
    Collections
    • 2016 RD&E publications
    • Clinical Genetics (Peninsula Genetics)

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