What were you thinking? Individuals at risk for huntington disease talk about having children

Kimberly A. Quaid, Melinda M. Swenson, Sharon L. Sims, Joan M. Harrison, Carol Moskowitz, Nonna Stepanov, Gregory W. Suter, Beryl J. Westphal

Research output: Contribution to journalArticle

14 Citations (Scopus)

Abstract

Most of the research on reproduction in those at risk for Huntington Disease (HD) has focused on the impact of genetic testing on reproductive decision-making. The main goal has been to determine whether discovering one is a carrier of the HD mutation changes an individual's or couple's decision to start a family or to have more children. The purpose of this qualitative study was to examine reproductive decision-making in a sample of individuals at risk for HD who have chosen not to pursue genetic testing. PHAROS (Prospective Huntington At Risk Observational Study) is a multi-site study that aims to establish whether experienced clinicians can reliably determine the earliest clinical symptoms of HD in a sample of individuals at 50% risk who have chosen not to pursue genetic testing. Data for this article were obtained from unstructured open ended qualitative interviews of a subsample of individuals participating in the PHAROS project. Interviews were conducted at six PHAROS research sites across the United States. In this paper, the research team used qualitative descriptive methods to construct and explore reproduction decision-making in three groups of people: 1) those who knew of their risk and decided to have children; 2) those who had children before they knew of their risk, and 3) those who chose not to have children based on their risk. We discuss the delicate balance health care professionals and genetic counselors must maintain between the benefits of providing hope and the dangers of offering unrealistic expectations about the time in which scientific advances actually may occur.

Original languageEnglish (US)
Pages (from-to)606-617
Number of pages12
JournalJournal of Genetic Counseling
Volume19
Issue number6
DOIs
StatePublished - Dec 2010
Externally publishedYes

Fingerprint

Huntington Disease
Genetic Testing
Observational Studies
Decision Making
Reproduction
Hope
Research
Interviews
Thinking
Delivery of Health Care
Mutation

Keywords

  • Genetic disease
  • Huntington disease
  • Reproduction
  • Reproductive decision-making

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Quaid, K. A., Swenson, M. M., Sims, S. L., Harrison, J. M., Moskowitz, C., Stepanov, N., ... Westphal, B. J. (2010). What were you thinking? Individuals at risk for huntington disease talk about having children. Journal of Genetic Counseling, 19(6), 606-617. https://doi.org/10.1007/s10897-010-9312-2

What were you thinking? Individuals at risk for huntington disease talk about having children. / Quaid, Kimberly A.; Swenson, Melinda M.; Sims, Sharon L.; Harrison, Joan M.; Moskowitz, Carol; Stepanov, Nonna; Suter, Gregory W.; Westphal, Beryl J.

In: Journal of Genetic Counseling, Vol. 19, No. 6, 12.2010, p. 606-617.

Research output: Contribution to journalArticle

Quaid, KA, Swenson, MM, Sims, SL, Harrison, JM, Moskowitz, C, Stepanov, N, Suter, GW & Westphal, BJ 2010, 'What were you thinking? Individuals at risk for huntington disease talk about having children', Journal of Genetic Counseling, vol. 19, no. 6, pp. 606-617. https://doi.org/10.1007/s10897-010-9312-2
Quaid, Kimberly A. ; Swenson, Melinda M. ; Sims, Sharon L. ; Harrison, Joan M. ; Moskowitz, Carol ; Stepanov, Nonna ; Suter, Gregory W. ; Westphal, Beryl J. / What were you thinking? Individuals at risk for huntington disease talk about having children. In: Journal of Genetic Counseling. 2010 ; Vol. 19, No. 6. pp. 606-617.
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