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Negotiating Responsibility: Case Studies Of Reproductive Decision-Making And Prenatal Genetic Testing In Families Facing Huntington Disease

  July, 26 2005 11:45
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Negotiating Responsibility: Case Studies Of Reproductive Decision-Making And Prenatal Genetic Testing In Families Facing Huntington Disease


Claudia Downing

Author Affiliation:

Centre for Family Research, University of Cambridge, Free School Lane, Cambridge, CB2 3RF, United Kingdom

Journal of Genetic Counseling
Issue: Volume 14, Number 3
Date: June 2005
Pages: 219-234


Three case studies are presented to further our understanding of how responsibility is negotiated in families when making decisions about genetic risk. These draw on a model of responsibility generated in a study of reproductive decision-making in families facing Huntington disease (HD) to illustrate the impact of prenatal testing on this process. This involves analyzing: how people present themselves as acting responsibly whether or not they utilize genetic testing; who they feel responsible to in their family and elsewhere; the impact that testing has on these relationships; and, how negotiating responsibility changes over time with repeated use of prenatal testing, changing risk status and maturational changes. Two key findings are: how decision-making is perceived can become as important as what is decided; and, how responsibility is negotiated depends on which of these relationships are prioritized. Implications of the findings for clinical practice are noted and suggestions made for further applications of the model.


Claudia Downing
Email: cd10008@cam.ac.uk

(C) Journal of Genetic Counseling

Posted by: Tressie Dalaya

Message posted by: Trevor M. D'Souza

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