Literature DB >> 18254838

Producing genetic knowledge and citizenship through the Internet: mothers, pediatric genetics, and cybermedicine.

Rebecca Schaffer1, Kristine Kuczynski, Debra Skinner.   

Abstract

This article analyses data from a longitudinal, ethnographic study conducted in the United States to examine how 100 mothers of children with genetic disorders used the Internet to interpret, produce, and circulate genetic knowledge pertaining to their child's condition. We describe how they came to value their own experiential knowledge, helped shift the boundaries of what counts as authoritative knowledge, and assumed the role of genetic citizen, fighting for specific rights while shouldering and contesting concomitant duties and obligations. This exploration of e-health use contributes to our understanding of the social practices and power relations that cut across online and off-line worlds to co-produce genetic knowledge and genetic citizenship in multiple contexts.

Entities:  

Mesh:

Year:  2008        PMID: 18254838     DOI: 10.1111/j.1467-9566.2007.01042.x

Source DB:  PubMed          Journal:  Sociol Health Illn        ISSN: 0141-9889


  24 in total

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7.  Internet use by parents of infants with positive newborn screens.

Authors:  Jane M DeLuca; Margaret H Kearney; Sally A Norton; Georgianne L Arnold
Journal:  J Inherit Metab Dis       Date:  2012-02-02       Impact factor: 4.982

8.  The devil you know: parents seeking information online for paediatric cancer.

Authors:  Elizabeth A Gage; Christina Panagakis
Journal:  Sociol Health Illn       Date:  2011-08-19

9.  A place for genetic uncertainty: parents valuing an unknown in the meaning of disease.

Authors:  Ian Whitmarsh; Arlene M Davis; Debra Skinner; Donald B Bailey
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10.  How parents search, interpret, and evaluate genetic information obtained from the internet.

Authors:  Myra I Roche; Debra Skinner
Journal:  J Genet Couns       Date:  2008-10-21       Impact factor: 2.537

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