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Online Module for Carrier Screening in Ashkenazi Jewish Individuals Compared with In-Person Genetics Education: A Randomized Controlled Trial

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

To increase accessibility to genetics services for low-urgency patients seeking Ashkenazi Jewish (AJ) carrier screening, we designed an interactive computer (IC) module that provides pre-test genetics education and allows genetics professionals to order the test without meeting the patients beforehand. We compared this module with in-person genetic counseling (GC) using a randomized trial. AJ individuals were randomized to undergo genetics education via the IC module (n = 26) or GC (n = 28). We compared post-interventional genetics knowledge, perceived genetic risk, and anxiety between the two groups, after accounting for pre-interventional scores, using ANCOVA. Wilcoxon Rank-Sum test was used to compare post-interventional satisfaction. Post-interventional genetics knowledge, risk perception, or anxiety were not significantly different between the two groups after accounting for baseline scores (p = 0.50–0.54), although the data are inconclusive regarding the module’s non-inferiority at a 5% margin. Post-intervention satisfaction scores were generally higher in the GC group than the IC module group. Our IC module has the potential to improve access to clinical genetics services for patients and staff, but it is not suitable for all AJ patients and cannot completely replace the benefits of in-person consultations.

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Acknowledgements

We thank Julie Kristof (MJHDF; testjgd.com) for helping to develop educational resources; Lyndsay Hodgson (MUHC Education Portfolio; muhcpatienteducation.ca) for her health literacy review of our IC module; Cindie Bilodeau (MUHC Information Services) for translating the module to an online interface; Andrea Ruchon, Ron Agatep and Laura Russell for accommodating new test protocols; Nora Wong and William Foulkes (Cancer Genetics, JGH) for representing our study before the JGH REB; Rimi Joshi, Karen El-Akouri, and Mara Caplum for assisting with participant recruitment; Natalie Palfreeman for assisting with counseling in-person participants; and Xianming Tan and Raman Agnihotram (Centre for Innovative Medicine Biostatistics Services, MUHC Research Institute) for assisting with our statistical analysis. Funding was provided by the McGill University Department of Human Genetics, the Quebec Association of Genetic Counsellors Student/New Graduate Research Project Bursary, and the British Columbia Children’s Hospital Foundation/Rare Disease Foundation Microgrant.

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  1. Chia Wei Fan, Lysanne Castonguay and Sonja Rummell have contributed equally to this work.

Authors and Affiliations

  1. Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, Quebec, Canada

    Chia Wei Fan, Lysanne Castonguay, Sonja Rummell, John J. Mitchell & Guillaume Sillon

  2. Department of Pediatrics, Division of Medical Genetics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Quebec, Canada

    Sébastien Lévesque

  3. Department of Medical Genetics, McGill University Health Center, 1001 boul. Décarie, Room A04.3140, Montreal, Quebec, H4A 3J1, Canada

    John J. Mitchell & Guillaume Sillon

  4. Department of Endocrinology and Metabolism, McGill University Health Center, Montreal, Quebec, Canada

    John J. Mitchell

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  1. Chia Wei Fan
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Correspondence to Guillaume Sillon.

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Conflict of Interest

All of the authors, Chia Wei Fan, Lysanne Castonguay, Sonja Rummell, Sébastien Lévesque, John J. Mitchell, and Guillaume Sillon, declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

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

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Fan, C.W., Castonguay, L., Rummell, S. et al. Online Module for Carrier Screening in Ashkenazi Jewish Individuals Compared with In-Person Genetics Education: A Randomized Controlled Trial. J Genet Counsel 27, 426–438 (2018). https://doi.org/10.1007/s10897-017-0133-4

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