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01-06-2007 | Original Research

Decision-Making About Reproductive Choices Among Individuals At-Risk for Huntington's Disease

Authors: Robert Klitzman, Deborah Thorne, Jennifer Williamson, Wendy Chung, Karen Marder

Published in: Journal of Genetic Counseling | Issue 3/2007

Abstract

We explored how individuals at-risk for HD who have or have not been tested make reproductive decisions and what factors are involved. We interviewed 21 individuals (8 with and 4 without the mutation, and 9 un-tested) in-depth for 2 hours each. At-risk individuals faced a difficult series of dilemmas of whether to: get pregnant and deliver, have fetal testing, have pre-implantation genetic diagnosis, adopt, or have no children. These individuals weighed competing desires and concerns: their own desires vs. those of spouses vs. broader moral concerns (e.g., to end the disease; and/or follow dictates against abortion) vs. perceptions of the interests of current or future offspring. Quandaries arose of how much and to whom to feel responsible. Some changed their perspectives over time (e.g., first “gambling,” then being more cautious). These data have critical implications for genetic counselors and other health care workers and future research, particularly as more genetic tests become available.

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Title: Decision-Making About Reproductive Choices Among Individuals At-Risk for Huntington's Disease
Authors: Robert Klitzman
Deborah Thorne
Jennifer Williamson
Wendy Chung
Karen Marder
Publication date: 01-06-2007
Publisher: Kluwer Academic Publishers-Plenum Publishers
Published in: Journal of Genetic Counseling / Issue 3/2007
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-006-9080-1

At a glance: The STEP trials

Springer Medicine

Decision-Making About Reproductive Choices Among Individuals At-Risk for Huntington's Disease

Abstract

At a glance: The STEP trials

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Abstract

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