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Related Experiment Video

Updated: Jun 27, 2026

FISH for Pre-implantation Genetic Diagnosis
07:34

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Published on: February 23, 2011

Assessing an Interactive Online Tool to Support Parents' Genomic Testing Decisions.

Shelin Adam1, Patricia H Birch2, Rachel R Coe1

  • 1Department of Medical Genetics, University of British Columbia, Box 153, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada.

Journal of Genetic Counseling
|July 24, 2018
PubMed
Summary

An online tool, DECIDE, effectively provided pre-test genetic counseling for genome-wide sequencing (GWS), matching traditional methods in patient knowledge. This digital approach enhances accessibility to genetic counseling services.

Keywords:
Decision aidDecisional supportGenetic counselingGenomic testing decisionsPatient knowledgePatient-empowerment

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Area of Science:

  • Genetics
  • Medical Informatics
  • Patient Education

Background:

  • Genome-wide sequencing (GWS) requires genetic counseling, but access is limited.
  • Developing accessible decision-support tools is crucial for clinical genetic services.

Purpose of the Study:

  • To assess the clinical utility of an interactive online decision-support tool, DECIDE, for pre-genome-wide sequencing (GWS) counseling.
  • To compare the effectiveness of DECIDE against standard genetic counseling in a non-inferiority trial.

Main Methods:

  • A non-inferiority trial involving 106 parents considering GWS for children with epilepsy.
  • Randomization to either DECIDE or conventional genetic counseling.
  • Measurement of parental knowledge, empowerment, and user opinions post-intervention.

Main Results:

  • Both DECIDE and conventional counseling significantly improved parental knowledge, with no significant difference between groups.
  • Parental empowerment showed a minimal increase (<2%) in both groups.
  • DECIDE was highly acceptable, with 81% recommending it and many finding it useful for decision-making.

Conclusions:

  • DECIDE is equivalent to traditional genetic counseling in conveying information prior to GWS.
  • The online tool effectively increases patient knowledge and is well-received, potentially extending genetic counseling resources.
  • DECIDE offers a viable solution to improve access to genetic counseling for genome-wide sequencing.