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

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Journal of Genetic Counseling

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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ACKNOWLEDGMENTS

The authors would like to thank Kristin Skrabut, Renée C. Fox, Mary DuVernay, Carol Moskowitz, and Paula Lieber for their assistance with this manuscript. Funding for this research was provided through grant 5-R01-HG002431-01 from the National Human Genome Research Institute.

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Authors and Affiliations

  1. Associate Professor of Clinical Psychiatry, College of Physicians and Surgeons and Mailman School of Public Health, Columbia University, New York, NY,, USA

    Robert Klitzman

  2. Department of Neurology, Psychiatry, College of Physicians and Surgeons, Columbia University, New York, NY, USA

    Deborah Thorne

  3. Department of Neurology, Psychiatry, College of Physicians and Surgeons, Gertrude H. Sergievsky Center, Columbia University, New York, NY, USA

    Jennifer Williamson

  4. Department of Neurology, Psychiatry, College of Physicians and Surgeons, Gertrude H. Sergievsky Center, Taub Institute for Alzheimer’s Disease and the Aging Brain, Columbia University, New York, NY, USA

    Wendy Chung & Karen Marder

  5. Robert Klitzman, M.D., HIV Center, Unit 15 1051 Riverside Drive, New York, NY, 10032, USA

    Robert Klitzman

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  1. Robert Klitzman
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  2. Deborah Thorne
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Correspondence to Robert Klitzman.

APPENDIX. A. Sample Questions from Semi-Structured Interview Guide

APPENDIX. A. Sample Questions from Semi-Structured Interview Guide

•When did you learn that you were at risk of

HD, and what was your reaction to it at that

time?

•How do you feel about being at risk of HD?

•Have you had genetic testing done?

  •If so, what was the result, and how did you   respond?

•How did you decide whether to have genetic testing done or not?

•How has being at risk for HD affected you?

•Do you have children? If so, how many?

•How have you made decisions about having children?

•Has HD affected your decisions to have

children in any way? If so, how?

•Has HD affected decisions by other members

of your family about having children? If so,

how?

•Do you have any other thoughts about these issues?

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Klitzman, R., Thorne, D., Williamson, J. et al. Decision-Making About Reproductive Choices Among Individuals At-Risk for Huntington's Disease. J Genet Counsel 16, 347–362 (2007). https://doi.org/10.1007/s10897-006-9080-1

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