Lay people's understanding of and preference against the word ?mutation?
Department of Speech Communication, University of Georgia, Athens, Georgia 30683, USA.American Journal of Medical Genetics Part A (Impact Factor: 2.16). 10/2004; 130A(3):245-50. DOI: 10.1002/ajmg.a.30264
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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- "The meaning or value of genetic findings—especially those that lack near-term clinical application—can be difficult to explain when non-scientists may be unfamiliar with key concepts [Bates, 2005; Condit, 2010]. Communities may lack linguistic or conceptual equivalents for technical terms such as ''penetrance;'' and certain words, such as ''mutation,'' carry negative connotations in everyday language [Condit et al., 2004]. "
ABSTRACT: The community-based participatory research (CBPR) literature notes that researchers should share study results with communities. In the case of human genetic research, results may be scientifically interesting but lack clinical relevance. The goals of this study were to learn what kinds of information community members want to receive about genetic research and how such information should be conveyed. We conducted eight focus group discussions with Yup'ik Alaska Native people in southwest Alaska (N = 60) and 6 (N = 61) with members of a large health maintenance organization in Seattle, Washington. Participants wanted to receive genetic information they "could do something about" and wanted clinically actionable information to be shared with their healthcare providers; they also wanted researchers to share knowledge about other topics of importance to the community. Although Alaska Native participants were generally less familiar with western scientific terms and less interested in web-based information sources, the main findings were the same in Alaska and Seattle: participants wished for ongoing dialogue, including opportunities for informal, small-group conversations, and receiving information that had local relevance. Effective community dissemination is more than a matter of presenting study results in lay language. Community members should be involved in both defining culturally appropriate communication strategies and in determining which information should be shared. Reframing dissemination as a two-way dialogue, rather than a one-way broadcast, supports the twin aims of advancing scientific knowledge and achieving community benefit. © 2015 Wiley Periodicals, Inc. © 2015 Wiley Periodicals, Inc.
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- "Participants also reported greater intentions to distance themselves socially from a sibling with a geneticallybased condition (Phelan, 2005). Indeed, the word " mutation " itself seems to generate negative connotations and strong negative reactions (Condit et al., 2004). Finally, people may start conversations about illness that were considered taboo within the family, such as asking questions about cancer within the family . "
ABSTRACT: Currently, one may describe awareness of genomics as limited, but growing in the US. Although awareness is limited, the US public expresses great concern that genomics could result in stigmatization and discrimination (Reproductive genetic testing: What America thinks. Washington, DC: Genetics and Public Policy Center, 2004). This situation provides a rare opportunity to think carefully about how to design communication to a general public in ways that galvanize positive sentiments around genomics instead of stimulate stigmas. This manuscript provides a synthesis of communication theories relevant to framing genomics in stigma and challenge formats, the details necessary to understand what such messages look like, and an illustration of the two frames. Many people in different roles are engaging in these conversations in many different contexts. Through the growing exposure and interest in genomics, the opportunity to proactively script messages to form beliefs and attitudes about genomics, instead of managing pre-existing ones, may disappear quickly.
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- "Alternatives to 'mutation' Condit et al. (2004) also discuss the terms 'alteration' and 'variation' to describe a cancerrelated mutation. They suggest that 'alteration' is associated with humans deliberately changing a person's genetic make-up, as in genetically altered organisms, while 'variation' is more often associated with naturally occurring differences between individuals (3). "
ABSTRACT: This study compared language preferences to describe a cancer-related mutation in three groups: 253 members of the general community, 20 clinicians working in cancer genetics, and 269 individuals at increased risk of carrying a cancer-related mutation (including 198 women with a strong family history of breast and/or ovarian cancer, and 71 individuals with a family history of hereditary non-polyposis colorectal cancer). In the community sample, 'faulty gene' was the preferred term to describe a cancer-related mutation, although females, those affected by cancer and those who felt cancer had a large impact on their lives were more likely to prefer the terms 'gene change' or 'altered gene'. In contrast, the clinicians' preference ratings for 'faulty gene' and 'gene change' were equal. When forced to choose between 'faulty gene' and 'altered gene', the high-risk patient group reported preferring 'faulty gene', although over 40% were happy with either term. Further research investigating individuals' understanding of the different terms that can be used to describe a cancer-related mutation, and the functional impact of these terms on patients' thoughts and feelings about their condition and on their health-related behavior after genetic counseling would be worthwhile.
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