Lay people's understanding of and preference against the word "mutation".
ABSTRACT Lay understandings of the term "mutation" are explored using three methodologies and three population bases. A community based sample (n = 848) employing a written survey to assess knowledge and understanding indicated good lay understanding of the basic concept of mutation. However, lay people associated mutation with reproductive outcomes, but not with changes in genes across the life span. A student sample (n = 241) employed a written survey to assess connotations of the term mutation. It showed a strong negative response to mutation. A community based sample (n = 120) employing focus groups also showed strong negative reactions to the term mutation and rejection of use of the term mutation in public service announcements (PSAs). The term variation had better response and is recommended as an alternative in genetic counseling and public media.
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ABSTRACT: Informed consent is based on communication, requiring language to convey meanings and ensure understandings. The purpose of this study was to investigate the use of language in informed consent documents used in the genetics research funded by Canadian Institutes of Health Research and Genome Canada. Consent documents were requested from the principal investigators in a recent round of funding. A qualitative content analysis was performed, supported by NVivo7™. Potential barriers to informed consent were identified, including language that was vague and variable, words with both technical and common meanings, novel phrases without clear meaning, a lack of definitions, and common concepts that assume new definitions in genetics research. However, we noted that difficulties in comprehension were often obscured because the words used were generally simple and familiar. We conclude that language gaps between researcher and potential research participants may unintentionally impair comprehension and ultimately impair informed consent in genomics research.Public Understanding of Science 04/2014; · 1.87 Impact Factor
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ABSTRACT: Pharmacogenetic (PGx) testing can provide information about a patient's likelihood to respond to a medication or experience an adverse event, and be used to inform medication selection and/or dosing. Promoting patient comprehension of PGx test results will be important to improving engagement and understanding of treatment decisions.Patient Education and Counseling 06/2014; · 2.60 Impact Factor
- Psykhe (Santiago). 05/2011; 20(1):3-14.