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Journal of Genetic Counseling
Published in: Journal of Genetic Counseling 4/2014

01-08-2014 | Original Research

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

Authors: Nathalie Egalite, Iris Jaitovich Groisman, Beatrice Godard

Published in: Journal of Genetic Counseling | Issue 4/2014

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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.
Footnotes
1
We maintained total anonymity of the IRBs that were the source of the texts analyzed herein. We analyzed the IRB-approved consent forms for NGS research in mental health as one set to avoid identification of the research groups and because the number of documents was insufficient for comparative purposes. Content written in French—as per the language of the informed consent document—was translated and is presented here in English.
 
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Metadata
Title
Genetic Counseling Practice in Next Generation Sequencing Research: Implications for the Ethical Oversight of the Informed Consent Process
Authors
Nathalie Egalite
Iris Jaitovich Groisman
Beatrice Godard
Publication date
01-08-2014
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 4/2014
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-014-9703-x

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