Language in genetics research informed consent: The language gap and unrecognized miscommunication
Abstract
Informed choice is fundamentally a process of communication, reliant entirely on the tools of language. However, the meanings and understandings of words change with time, setting, and context, threatening the basis of consent. We conducted a qualitative content analysis of Canadian genetics research documents, exploring the impacts of language on informed consent. Numerous language usages were noted as potential barriers to informed consent, including language that was vague, variable, and unusually defined. Unique combinations of words were observed to generate novel concepts without clear meanings and definitions were absent or unclear. However, the ambiguity of the language was concealed by words that were simple and familiar. We conclude that a gap in communication may exist when discussing genetics, health, and disease, in that the same words, when used by different individuals, can have different meanings, and thus individuals may not fully understand each other despite using the same words.