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

Schaffer R; Kuczynski K; Skinner D

doi:10.1111/j.1467-9566.2007.01042.x

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

Schaffer R ¹,

Kuczynski K ,

Skinner D

Affiliations

1. Anthropology, University of North Carolina at Chapel Hill, North Carolina, USA.
Authors
Schaffer R¹
(1 author)

Sociology of Health & Illness, 01 Jan 2008, 30(1):145-159
https://doi.org/10.1111/j.1467-9566.2007.01042.x PMID: 18254838

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.

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Read article at publisher's site: https://doi.org/10.1111/j.1467-9566.2007.01042.x

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Funding

Funders who supported this work.

NHGRI NIH HHS (1)

Grant ID: R01 HG02164
1 publication

Search life-sciences literature (44,943,890 articles, preprints and more)

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

Affiliations

Authors

Abstract

Full text links

References

Use of the Internet and e-mail for health care information: results from a national survey.

Virtually he@lthy: the impact of internet use on disease experience and the doctor-patient relationship.

Medical genetics and patient use of the Internet.

Transparency and selfhood: Utopia and the informed body.

Characteristics of online and offline health information seekers and factors that discriminate between them.

Davis, R. and Miller, L. (1999) Net empowering patients, millions scour the web to find medical information, USA Today, 14 July, 1A. Retrieved 18 February 2002 from LexisNexis database.

Title not supplied

Bridging the digital divide

Title not supplied

The patient physician relationship in the Internet age: future prospects and the research agenda.

Citations & impact

Impact metrics

Citations of article over time

Smart citations by scite.ai
Explore citation contexts and check if this article has been supported or disputed.
https://scite.ai/reports/10.1111/j.1467-9566.2007.01042.x

Article citations

Moving to the Middle Ground: Redefining Genomic Utility to Expand Understanding of Familial Benefit.

Genomic Health Literacy Interventions in Pediatrics: Scoping Review.

Risks and Benefits of Web-Based Patient Narratives: Systematic Review.

Parents' perceptions of personal utility of exome sequencing results.

The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust.

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Search life-sciences literature (44,943,890 articles, preprints and more)

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

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Authors

Abstract

Full text links

References

Davis, R. and Miller, L. (1999) Net empowering patients, millions scour the web to find medical information, USA Today, 14 July, 1A. Retrieved 18 February 2002 from LexisNexis database.

Title not supplied

Bridging the digital divide

Title not supplied

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Article citations

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Funding

NHGRI NIH HHS (1)﻿

Partnerships & funding

NHGRI NIH HHS (1)