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Journal of Genetic Counseling

, Volume 24, Issue 3, pp 400–408 | Cite as

Education and Parental Involvement in Decision-Making About Newborn Screening: Understanding Goals to Clarify Content

  • Beth K. PotterEmail author
  • Holly Etchegary
  • Stuart G. Nicholls
  • Brenda J. Wilson
  • Samantha M. Craigie
  • Makda H. Araia
Theory Based Paper

Abstract

A challenge in designing effective education for parents about newborn screening (NBS) has been uncertainty about appropriate content. Arguing that the goals of education may be usefully tied to parental decision-making, we sought to: (1) explore how different ways of implementing NBS differ in their approaches to parental engagement in decision-making; (2) map the potential goals of education onto these “implementation models”; and (3) consider the content that may be needed to support these goals. The resulting conceptual framework supports the availability of comprehensive information about NBS for parents, irrespective of the model of implementation. This is largely because we argue that meeting parental expectations and preferences for communication is an important goal regardless of whether or notparents are actively involved in making a decision. Our analysis supports a flexible approach, in which some educational messages are emphasized as important for all parents to understand while others are made available depending on parents’ preferences. We have begun to define the content of NBS education for parents needed to support specific goals. Further research and discussion is important to determine the most appropriate strategies for delivering the tailored approach to education that emerged from our analysis.

Keywords

Newborn screening Education Consent 

Notes

Conflict of Interest

Beth K Potter declares that she has no conflict of interest. Holly Etchegary declares that she has no conflict of interest. Stuart G Nicholls declares that he has no conflict of interest. Brenda J Wilson declares that she has no conflict of interest. Samantha M Craigie declares that she has no conflict of interest. Makda H Araia declares that she has no conflict of interest.

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Copyright information

© National Society of Genetic Counselors, Inc. 2014

Authors and Affiliations

  • Beth K. Potter
    • 1
    Email author
  • Holly Etchegary
    • 2
  • Stuart G. Nicholls
    • 1
  • Brenda J. Wilson
    • 1
  • Samantha M. Craigie
    • 1
  • Makda H. Araia
    • 1
  1. 1.Department of Epidemiology & Community MedicineUniversity of OttawaOttawaCanada
  2. 2.Memorial University/Eastern HealthSt John’sCanada

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