Journal of Genetic Counseling

, Volume 23, Issue 4, pp 661–670

Genetic Counseling Practice in Next Generation Sequencing Research: Implications for the Ethical Oversight of the Informed Consent Process

Authors

  • Nathalie Egalite
    • Groupe de recherche Omics-Ethics, Programmes de bioéthique, École de santé publiqueUniversité de Montréal
  • Iris Jaitovich Groisman
    • Groupe de recherche Omics-Ethics, Programmes de bioéthique, École de santé publiqueUniversité de Montréal
    • Groupe de recherche Omics-Ethics, Programmes de bioéthique, École de santé publiqueUniversité de Montréal
Original Research

DOI: 10.1007/s10897-014-9703-x

Cite this article as:
Egalite, N., Groisman, I.J. & Godard, B. J Genet Counsel (2014) 23: 661. doi:10.1007/s10897-014-9703-x

Abstract

The potential for next generation sequencing research (NGS) to generate individual genetic results could have implications for the informed consent process and the provision of genetic counseling. We undertook a content analysis of informed consent templates and guidelines produced by Canadian institutional review boards, purposively sampling documents used by researchers to obtain consent from participants in genetics studies. Our goal was to examine the extent to which the informed consent documents addressed genetic counseling and the return of individual genetic results. Our analysis reveals that the majority of informed consent documents did not mention genetic counseling while several did not mention the return of results. We found differences in the ways in which documents addressed availability of counseling, eligibility criteria for referral to a genetic counselor, genetic counselor involvement, provision of services to family members of participants and incidental findings. From an ethical standpoint, consent documents should provide appropriate information so that participants may make an informed decision about their participation in research. The need to ensure adequate counseling for study populations in an NGS research context will necessarily involve adapting values that underlie care in genetic counseling practice. If the interests of research participants are to be truly promoted, the drafting and review of informed consent documents should give proper due to genetic counseling.

Keywords

Genetic counselingNext generation sequencingInformed consentGenetic researchReturn of resultsIncidental findingsConsent formsEthical issues

Copyright information

© National Society of Genetic Counselors, Inc. 2014