Journal of Genetic Counseling

, Volume 22, Issue 1, pp 108–117

Design and Evaluation of a Decision Aid for Inviting Parents to Participate in a Fragile X Newborn Screening Pilot Study

Authors

    • RTI International
  • Megan A. Lewis
    • RTI International
  • Shelly L. Harris
    • RTI International
  • Tracey Grant
    • RTI International
  • Carla Bann
    • RTI International
  • Ellen Bishop
    • RTI International
  • Myra Roche
    • University of North Carolina at Chapel Hill
  • Sonia Guarda
    • University of North Carolina at Chapel Hill
  • Leah Barnum
    • University of North Carolina at Chapel Hill
  • Cynthia Powell
    • University of North Carolina at Chapel Hill
  • Bradford L. TherrellJr.
    • University of Texas Health Science Center at San Antonio
Original Research

DOI: 10.1007/s10897-012-9511-0

Cite this article as:
Bailey, D.B., Lewis, M.A., Harris, S.L. et al. J Genet Counsel (2013) 22: 108. doi:10.1007/s10897-012-9511-0

Abstract

The major objectives of this project were to develop and evaluate a brochure to help parents make an informed decision about participation in a fragile X newborn screening study. We used an iterative development process that drew on principles of Informed Decision Making (IDM), stakeholder input, design expertise, and expert evaluation. A simulation study with 118 women examined response to the brochure. An independent review rated the brochure high on informational content, guidance, and values. Mothers took an average of 6.5 min to read it and scored an average of 91.1 % correct on a knowledge test. Most women rated the brochure as high quality and trustworthy. When asked to make a hypothetical decision about study participation, 61.9 % would agree to screening. Structural equation modeling showed that agreement to screening and decisional confidence were associated with perceived quality and trust in the brochure. Minority and white mothers did not differ in perceptions of quality or trust. We demonstrate the application of IDM in developing a study brochure. The brochure was highly rated by experts and consumers, met high standards for IDM, and achieved stated goals in a simulation study. The IDM provides a model for consent in research disclosing complicated genetic information of uncertain value.

Keywords

Newborn screeningInformed decision makingDecision aids

Copyright information

© National Society of Genetic Counselors, Inc. 2012