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"You're one of us now": Young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP)

Abstract:

There has been much debate about the psychosocial effects of predictive genetic testing in minors. The majority of this debate has been theoretical, with little empirical evidence published. We conducted in-depth interviews with 18 young people who had undergone testing, to explore the range of harms and benefits that they perceived were associated with their tests. Participants were eight individuals who were tested for Huntington disease (two gene-positive, six gene-negative) and ten who we...

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Publisher copy:
10.1002/ajmg.c.30158

Authors


Duncan, RE More by this author
More by this author
Institution:
University of Oxford
Department:
Oxford, HUM, Philosophy, Philosophy Postholders
Williamson, R More by this author
Rogers, JG More by this author
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Journal:
American Journal of Medical Genetics, Part C: Seminars in Medical Genetics
Volume:
148
Issue:
1
Pages:
47-55
Publication date:
2008-02-15
DOI:
EISSN:
1552-4876
ISSN:
1552-4868
URN:
uuid:ca85b25d-abdb-447f-bc22-582ae06a2353
Source identifiers:
192624
Local pid:
pubs:192624

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