Journal of Genetic Counseling

, Volume 25, Issue 5, pp 1044–1053 | Cite as

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 Wasserstein
  • Andrew Kasarskis
  • Eric E. Schadt
  • Randi E. Zinberg
Original Research


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.


Whole genome sequencing Informed decision-making Genomic counseling Genetic counseling 


Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.

Informed Consent

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

Supplementary material

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Online Resource 6 (DOCX 17 kb)


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Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  • Sabrina A. Suckiel
    • 1
    • 2
  • Michael D. Linderman
    • 1
    • 2
  • Saskia C. Sanderson
    • 1
    • 2
    • 3
  • George A. Diaz
    • 1
  • Melissa Wasserstein
    • 1
  • Andrew Kasarskis
    • 1
    • 2
  • Eric E. Schadt
    • 1
    • 2
  • Randi E. Zinberg
    • 1
  1. 1.Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount SinaiNew YorkUSA
  2. 2.Icahn Institute of Genomics and Multiscale BiologyIcahn School of Medicine at Mount SinaiNew YorkUSA
  3. 3.Health Behaviour Research CentreUniversity College LondonLondonUK

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