Journal article

Readability of informed consent forms for whole-exome and whole-genome sequencing.

Emilia Niemiec, Danya F Vears, Pascal Borry, Heidi Carmen Howard

Journal of Community Genetics | Published : 2018

Abstract

Whole-exome and whole-genome sequencing (WES, WGS) can generate an unprecedented amount of complex information, making the informed consent (IC) process challenging. The aim of our study was to assess the readability of English IC forms for clinical whole-exome and whole-genome sequencing using the SMOG and Flesch-Kincaid formulas. We analysed 36 forms, most of which were from US providers. The median readability grade levels were 14.75 (the SMOG formula) and 12.2 (the Flesch-Kincaid formula); these values indicate the years of education after which a person would be able to understand a text studied. All forms studied seem to fail to meet the average recommended readability grade level of 8..

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University of Melbourne Researchers

Grants

Awarded by Swedish Foundation for Humanities and Social Sciences (Riksbankens Jubileumsfond)


Awarded by CHIP ME COST Action IS1303


Awarded by the Ministère de l'Économie, de la Science et de l'Innovation du Québec