Impact of Genomic Counseling on Informed Decision-Making among ostensibly Healthy Individuals Seeking Personal Genome Sequencing

the HealthSeq Project

Sabrina A. Suckiel, Michael D. Linderman, Saskia C. Sanderson, George A. Diaz, Melissa P. Wasserstein, Andrew Kasarskis, Eric E. Schadt, Randi E. Zinberg

Research output: Contribution to journalArticle

7 Citations (Scopus)

Abstract

Personal genome sequencing is increasingly utilized by healthy individuals for predispositional screening and other applications. However, little is known about the impact of ‘genomic counseling’ on informed decision-making in this context. Our primary aim was to compare measures of participants’ informed decision-making before and after genomic counseling in the HealthSeq project, a longitudinal cohort study of individuals receiving personal results from whole genome sequencing (WGS). Our secondary aims were to assess the impact of the counseling on WGS knowledge and concerns, and to explore participants’ satisfaction with the counseling. Questionnaires were administered to participants (n = 35) before and after their pre-test genomic counseling appointment. Informed decision-making was measured using the Decisional Conflict Scale (DCS) and the Satisfaction with Decision Scale (SDS). DCS scores decreased after genomic counseling (mean: 11.34 before vs. 5.94 after; z = −4.34, p < 0.001, r = 0.52), and SDS scores increased (mean: 27.91 vs. 29.06 respectively; z = 2.91, p = 0.004, r = 0.35). Satisfaction with counseling was high (mean (SD) = 26.91 (2.68), on a scale where 6 = low and 30 = high satisfaction). HealthSeq participants felt that their decision regarding receiving personal results from WGS was more informed after genomic counseling. Further research comparing the impact of different genomic counseling models is needed.

Original languageEnglish (US)
Pages (from-to)1044-1053
Number of pages10
JournalJournal of Genetic Counseling
Volume25
Issue number5
DOIs
StatePublished - Oct 1 2016
Externally publishedYes

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Counseling
Decision Making
Genome
Longitudinal Studies
Appointments and Schedules
Cohort Studies
Research

Keywords

  • Genetic counseling
  • Genomic counseling
  • Informed decision-making
  • Whole genome sequencing

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Impact of Genomic Counseling on Informed Decision-Making among ostensibly Healthy Individuals Seeking Personal Genome Sequencing : the HealthSeq Project. / Suckiel, Sabrina A.; Linderman, Michael D.; Sanderson, Saskia C.; Diaz, George A.; Wasserstein, Melissa P.; Kasarskis, Andrew; Schadt, Eric E.; Zinberg, Randi E.

In: Journal of Genetic Counseling, Vol. 25, No. 5, 01.10.2016, p. 1044-1053.

Research output: Contribution to journalArticle

Suckiel, Sabrina A. ; Linderman, Michael D. ; Sanderson, Saskia C. ; Diaz, George A. ; Wasserstein, Melissa P. ; Kasarskis, Andrew ; Schadt, Eric E. ; Zinberg, Randi E. / Impact of Genomic Counseling on Informed Decision-Making among ostensibly Healthy Individuals Seeking Personal Genome Sequencing : the HealthSeq Project. In: Journal of Genetic Counseling. 2016 ; Vol. 25, No. 5. pp. 1044-1053.
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