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

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Ethical issues raised by incorporation of genetics into the National Birth Defects Prevention Study.

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

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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).

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Duncan, Rony E. Gillam, Lynn Savulescu, Julian Williamson, Robert Rogers, John G. Delatycki, Martin B.
Description	Country affiliation: Australia Author Affiliation: Duncan RE ( Centre for Adolescent Health, Murdoch Childrens Research Institute, Melbourne, Australia. rony.duncan@mcri.edu.au)
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 were tested for familial adenomatous polyposis (five gene-positive, five gene-negative). At the time of their test they ranged from 10 to 25 years of age. When interviewed they ranged from 14 to 26 years of age. Harms described included knowledge of future illness, witnessing distress in parents, negative effects on family relationships and friendships, effects upon employment and school, experiencing regret, feeling guilty and having to confront difficult issues. Benefits included knowledge of gene-negative status, relief from uncertainty, witnessing relief in parents, feeling able to plan for the future, positive effects on family relationships and friendships, feeling empowered and experiencing a sense of clarity about what is important in life. Harms were described in relation to gene-negative test results, as were benefits in relation to gene-positive test results. The testing process itself had several positive and negative effects for young people, distinct from the actual test result. Future research concerning the effects of predictive genetic testing in young people must remain broad and should aim to measure the beneficial as well as the harmful effects that resonate for young people themselves.
File Format	HTM / HTML
ISSN	15524868
Issue Number	1
Volume Number	148C
e-ISSN	15524876
Journal	American Journal of Medical Genetics Part C: Seminars in Medical Genetics
Language	English
Publisher	Wiley
Publisher Date	2008-02-15
Publisher Place	United States
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Discipline Genetics Discipline Medical Adenomatous Polyposis Coli Genetics Genetic Predisposition To Disease Genetic Testing Ethics Psychology Huntington Disease Diagnosis Adolescent Female Humans Interviews As Topic Male Predictive Value Of Tests Qualitative Research Comparative Study Journal Article
Content Type	Text
Resource Type	Article
Subject	Genetics Genetics (clinical)

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