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

Journal article

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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Authors: Duncan, R; Gillam, L; Savulescu, J; Williamson, R; Rogers, J

• Publication status: Published
• Journal: American journal of medical genetics. Part C, Seminars in medical genetics
• Volume: 148C
• Issue: 1
• Pages: 47-55
• Publication date: 2008-02-01
• DOI: 10.1002/ajmg.c.30158
• EISSN: 1552-4876
• ISSN: 1552-4868
• Language: English
• Keywords: Female; Humans; Huntington Disease; Genetic Predisposition to Disease; Qualitative Research; Genetic Testing; Male; Interviews as Topic; Adenomatous Polyposis Coli; Predictive Value of Tests; Adolescent