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Journal of Genetic Counseling

, Volume 19, Issue 4, pp 402–416 | Cite as

Attitudes of Genetic Counselors Towards Genetic Susceptibility Testing in Children

  • Rishona L. Mackoff
  • Ellen F. Iverson
  • Preston Kiekel
  • Frederick Dorey
  • Jeffrey S. Upperman
  • Aida B. Metzenberg
Original Research

Abstract

Genetic susceptibility research and testing is leading to an era of personalized medicine. Genetic counselors act as liaisons between the medical genetics community and the public. Understanding the opinions of genetic counselors will be important in developing testing guidelines. Attitudes towards genetic susceptibility testing in children were assessed for 216 NSGC members. Genetic counselors were likely to support testing if the results would determine: disease progression or prognosis, likelihood of survival after a specific treatment, or risk for an adverse drug reaction. Genetic counselors were unlikely to support testing to determine susceptibility to later disease development or in the absence of available intervention. There was a strong positive correlation between attitudes associated with desire to test their own child, if at risk and their support for genetic testing in any child at risk. Respondents strongly favored parent/guardian and child’s rights over doctor or insurance rights. They indicated assent should be obtained prior to testing, when appropriate, and that a copy of results should be kept in a permanent medical record. Respondents expressed concerns about insurance discrimination, testing in the absence of medical necessity, and taking away a child’s autonomy.

Keywords

Genetic testing Susceptibility Children Attitudes Genetic counselors Guidelines Discrimination Autonomy 

Notes

Acknowledgement

The work for this grant was supported in part by funding from the National Institutes of Health (1R03HD057407-01A2)(JU, EI).

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Copyright information

© National Society of Genetic Counselors, Inc. 2010

Authors and Affiliations

  • Rishona L. Mackoff
    • 1
    • 4
  • Ellen F. Iverson
    • 2
  • Preston Kiekel
    • 2
  • Frederick Dorey
    • 2
  • Jeffrey S. Upperman
    • 3
  • Aida B. Metzenberg
    • 1
  1. 1.Department of BiologyCalifornia State University, NorthridgeNorthridgeUSA
  2. 2.Department of PediatricsUSC Keck School of MedicineLos AngelesUSA
  3. 3.Division of Pediatric SurgeryUSC Keck School of MedicineLos AngelesUSA
  4. 4.North HillsUSA

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