What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Statusand Predictive Genetic Testing

Kathryn Holt

doi:10.1007/s10897-006-9021-z

Journal of Genetic Counseling

August 2006, Volume 15, Issue 4, pp 253–265

What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Statusand Predictive Genetic Testing

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Kathryn HoltEmail author

Original Research

First Online:: 19 July 2006

DOI: 10.1007/s10897-006-9021-z

Cite this article as:: Holt, K. J Genet Counsel (2006) 15: 253. doi:10.1007/s10897-006-9021-z

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Above all else, predictive genetic testing provides information. Gaining insight into the psychosocial effects of this information is a primary goal of genetic counseling. For individuals utilizing predictive genetic testing, the acquisition of genetic information requires choices regarding disclosure within the family. This study uses a phenomenological methodology to explore the contrasting choices of two sets of HD parents regarding the disclosure of genetic risk status to their children. Additionally, the children (now adults) discuss their lived experience growing up with contrasting disclosure dynamics, and their current views regarding the use of predictive genetic testing for themselves. The primary finding of this study is that all of the adult children now express preference for early disclosure of genetic risk and an open/supportive communication style regarding HD. This finding has value for clinicians working with HD families who must make decisions regarding disclosure issues related to predictive genetic testing.

KEY WORDS:

communication disclosure family communication genetic counseling genetic testing Huntington's Disease qualitative predictive genetic testing risk statusIntroduction.

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Authors and Affiliations

Kathryn Holt
- 1
- 2
Email author

1.Harold Abel School of PsychologyCapella UniversityMinneapolisUSA
2.PhD, LPC, NCC, 221 E. AdamsTaylorvilleIllinoisUSA

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What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Statusand Predictive Genetic Testing

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