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01-02-2010 | Original Research

Explaining Mendelian Inheritance in Genetic Consultations: An IPR Study of Counselor and Counselee Experiences

Authors: Theodora Gale, Sara Pasalodos-Sanchez, Lauren Kerzin-Storrar, Georgina Hall, Rhona MacLeod

Published in: Journal of Genetic Counseling | Issue 1/2010

Abstract

The explanation of Mendelian inheritance is a key component of most genetic counselling consultations, yet no evidence base exists for this area of practice. This qualitative study used Interpersonal Process Recall (IPR) to explore how information about X-linked inheritance is provided and received in genetic counseling. Twelve consultations involving two senior genetic counselors and 21 counselees were videotaped. Section(s) of videotape featuring the explanation were subsequently played back separately to both counselees and counselors and their responses and reflections recorded. All interviews were fully transcribed and analysed using the constant comparison method. A personalised diagram, drawn “live” by the counselor during the consultation was recalled by counselees as being central to their understanding of the “bottom line”. This helped bridge the gap between scientific information and their family experience and did not appear to require a baseline understanding of genetic concepts such as genes or chromosomes. Counselors reflected on the diagram’s positive impact on the way they sequenced, paced and tailored the explanation. A positive counselor-counselee relationship was vital even during this educative exchange: for counselees to feel at ease discussing complex genetic information and to help gauge counselee understanding.

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Title: Explaining Mendelian Inheritance in Genetic Consultations: An IPR Study of Counselor and Counselee Experiences
Authors: Theodora Gale
Sara Pasalodos-Sanchez
Lauren Kerzin-Storrar
Georgina Hall
Rhona MacLeod
Publication date: 01-02-2010
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 1/2010
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-009-9263-7

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Explaining Mendelian Inheritance in Genetic Consultations: An IPR Study of Counselor and Counselee Experiences

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