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The language of these documents was difficult to interpret. My initial goal of developing contextual definitions of key terminology proved to be impossible. Language use was far too complex, ambiguous, and variable to allow inference of the authors’ intended

meanings.

Despite the complexity in the language presented throughout this theme, my presentation fails to capture the utter confusion I was faced with throughout the process of coding. The organization of language into discrete categories for the purposes of writing produces an artificial sense of order in the presented data. In this analysis, I compare and contrast language usages that, because they exist across many different documents and studies, would not be evident to the audience of any individual document. Furthermore, each category of language described here was modified by countless others, each of which was equally complex. For example, subthemes that developed in conjunction with the

language of causation, but were not presented due to limitations on space, included: language describing multiple levels of causation (from gene to protein to organism); language describing who gets sick (from individuals to families to communities);

language of certainty and uncertainty (such as ‘the gene may cause’); language describing

heredity; and the lack of language depicting non-genetic causes. The language of each of these subthemes was equally complex, variable, and vague, and therefore the overall depiction of the authors’ understandings of genetic causation was chaotic.

Vague or incomprehensible language is problematic for informed consent. The importance of comprehensible consent forms, which eliminate abstruse language and esoteric jargon, is well recognized (Sankar 2004, Stead, Eadie et al. 2005, Beardsley, Jefford et al. 2007). Certainly, unfamiliar or technical language was a factor in my confusion. However, the vast majority of language used was common and superficially uncomplicated. That common language can also confuse was a key insight from this research. Unlike jargon, the equivocal meaning of these common words is unlikely to be recognized. Consequently, the intended meanings of these words will not be clarified, increasing the likelihood of unrecognized miscommunication.

The role of genetics in health and disease is complex and interpreted differently throughout the literature (Lippman 1992, Conrad 1999, Cox and Starzomski 2004, Mykitiuk and Nisker 2010). The genetic framework, based in probability and prediction, varies significantly from traditional depictions of health and disease (Bayertz 1998, ten Have 2003, Bhutta 2004). Furthermore, personal understanding of genetic health

conditions will be strongly influenced by individual life experiences (Wittgenstein 1968). Therefore, it is likely that a geneticist, having spent years focused on the potential genetic mechanisms of disease, will have different understandings of genetics related language than the general public. However, the ambiguity and variability of the language

encountered in these documents obscures any such differences in understanding.

When definitions are not explicit, readers are forced to guess at intended meanings, allowing other, potentially inappropriate factors to influence understanding. It is

recognized that the media has created significant hype around genetic research that could skew understandings (Petersen 2001, Bubela and Caulfield 2004). The language of these documents subtly reinforces such hype by portraying genetics as the only or major cause, and intimately connecting disease phenotype with genetic changes. Furthermore, these documents are written and distributed by experts and authority figures, and therefore have a sense of objectivity. A bias towards genetics is probably expected in documents arising from genetic research (as any researcher will likely have a bias in favour of his or her own research), but when such language appears in informed consent documents it may inappropriately aggrandize the potential benefits and thus entice participation.

Language may influence informed choice, but again one should not infer that these researchers are manipulating their research participants. These researchers generously and voluntarily participated in this ethics study. They are highly respected clinicians with their patients’ and research participants’ best interests at heart. I have described new understandings of the ways that familiar language can result in miscommunication and therefore influence informed consent. As far as I know, this is the first time some of these issues have been noted, so the authors of these documents could not have been aware of them. Potential research participants may be enticed into participation, but if they are it would be the result of the unintended and unrecognized ambiguity of the everyday language that was used.

Significant differences were noted between the language used in consent documents and the language found elsewhere in the genetic research documents. In general, the language

in consent documents was limited and simplified when compared to other research documents, such as grant applications and published papers. This is consistent with the push to make informed consent documents comprehensible by writing them in language suitable to specific, lower grade levels (Hochhauser 1997, Baevsky 2008, Jefford and Moore 2008). Unfortunately, biologic processes are inherently complex, and the process of simplifying language also seems to simplify the depiction of those processes. Thus, although the goal of simplifying language is to increase comprehension, the descriptions provided may sacrifice important information and therefore actually inhibit

understanding.

Misunderstandings arising from common, but inconsistently interpreted language may also have effects that extend beyond informed consent. Decisions to conduct and fund research may be influenced by language use that emphasizes the importance of the genome. Independent of scientific support, understandings of genetics will also influence medical practice and patient expectations (Liss, Aspevali et al. 2004). Furthermore, conclusions about genetic causality may extend beyond molecular mechanisms and into the social realm, affecting ideas of personal, familial, and social responsibility (Rothstein and Billings 1992, Crosseley 2002). Finally, varying understandings of vague and

variable language can contribute to the capacity of our language to cause harm (Rothstein 1991, Nisker and Daar 2006). For these reasons, it will be important to further explore the understandings of the genetics related language discussed here with the authors of these documents and their intended audience.