Journal of Genetic Counseling

, Volume 16, Issue 3, pp 347–362

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

  • Robert Klitzman
  • Deborah Thorne
  • Jennifer Williamson
  • Wendy Chung
  • Karen Marder
Original Research

DOI: 10.1007/s10897-006-9080-1

Cite this article as:
Klitzman, R., Thorne, D., Williamson, J. et al. J Genet Counsel (2007) 16: 347. doi:10.1007/s10897-006-9080-1

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.

KEY WORDS:

reproductive choicesgeneticspre-implantation genetic diagnosisethicsdecision-makingrisk assessmentsqualitative research.

Copyright information

© Springer Science+Business Media, LLC 2007

Authors and Affiliations

  • Robert Klitzman
    • 1
    • 5
  • Deborah Thorne
    • 2
  • Jennifer Williamson
    • 3
  • Wendy Chung
    • 4
  • Karen Marder
    • 4
  1. 1.Associate Professor of Clinical Psychiatry, College of Physicians and Surgeons and Mailman School of Public Health, Columbia UniversityNew YorkUSA
  2. 2.Department of Neurology, Psychiatry, College of Physicians and SurgeonsColumbia UniversityNew YorkUSA
  3. 3.Department of Neurology, Psychiatry, College of Physicians and Surgeons, Gertrude H. Sergievsky CenterColumbia UniversityNew YorkUSA
  4. 4.Department of Neurology, Psychiatry, College of Physicians and Surgeons, Gertrude H. Sergievsky CenterTaub Institute for Alzheimer’s Disease and the Aging Brain, Columbia UniversityNew YorkUSA
  5. 5.Robert Klitzman, M.D., HIV CenterNew YorkUSA