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Journal of Genetic Counseling

, Volume 19, Issue 2, pp 131–147 | Cite as

Genetic Counselors’ Perceived Responsibilities Regarding Reproductive Issues for Patients at Risk for Huntington Disease

  • Karrie A. Hines
  • Patricia McCarthy VeachEmail author
  • Bonnie S. LeRoy
Original Research

Abstract

Research indicates that health care professionals’ attitudes may affect patients’ decisions regarding prenatal Huntington Disease testing, but few studies have sampled genetic counselors. In this qualitative study, genetic counselors described their experiences counseling individuals at risk for HD regarding reproductive decision-making. Five major research questions were investigated: 1) What are genetic counselor responsibilities? 2) What issues arise for patients and counselors? 3) How do counselors reconcile prenatal testing with presymptomatic testing? 4) To what extent are counselors’ initial expectations of at-risk patients’ beliefs and behaviors met? and 5) What advice would counselors offer to novice practitioners about working with this patient population? Fifteen genetic counselors experienced in counseling individuals at risk for HD participated in a semi-structured phone interview that yielded several themes. For example, participants identified their primary responsibility as information provision; less prevalent were psychosocial support and facilitating decision making. The most common ethical challenge was testing prenatally for HD which also results in presymptomatic testing of minors. Participants were divided about how directive to be in response to this ethical issue and about termination of a gene positive pregnancy.

Keywords

Huntington disease testing Prenatal testing Reproductive decision-making Presymptomatic testing of minors Genetic counselor perceived responsibilities Ethical dilemmas Genetic counseling 

Notes

Acknowledgements

This study was completed in partial fulfillment of the requirements for the first author’s Master of Science degree from the University of Minnesota. We are grateful to the participants for taking the time to provide such thoughtful comments.

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Copyright information

© National Society of Genetic Counselors, Inc. 2009

Authors and Affiliations

  • Karrie A. Hines
    • 1
  • Patricia McCarthy Veach
    • 2
    Email author
  • Bonnie S. LeRoy
    • 3
  1. 1.Department of Obstetrics and GynecologyIndiana University School of MedicineIndianapolisUSA
  2. 2.Department of Educational PsychologyUniversity of MinnesotaMinneapolisUSA
  3. 3.Department of Genetics, Cell Biology, and Development, Institute of Human GeneticsUniversity of MinnesotaMinneapolisUSA

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