What does “A gene for heart disease” mean? A focus group study of public understandings of genetic risk factors

Bates, Benjamin R.; Templeton, Alan R.; Achter, Paul; Harris, Tina M.; Condit, Celeste M.

doi:10.1002/ajmg.a.20113

Cited by 78 publications

(56 citation statements)

References 17 publications

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“…There was an almost complete absence of fatalism about the condition, in as much as FH was largely seen as controllable through adhering to appropriate behavioral and therapeutic regimes. Fears that patient populations may understand genetic risk factors for common diseases in a deterministic way [50] appear to be unfounded in the case of FH.…”

Section: Discussionmentioning

confidence: 99%

Patients’ Understandings and Experiences of Familial Hypercholesterolemia

Weiner

Durrington

2008

Public Health Genomics

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Aims: To explore patients’ understanding and experiences of familial hypercholesterolemia (FH) and the significance of the hereditary aspect of the condition. Methods: A qualitative study undertaken at a large lipid clinic in the north of England, involving semistructured interviews with 31 patients with definite FH, aged 18 years or over, who had attended the clinic for at least 6 months. Results: Participants’ explanations of FH and coronary heart disease (CHD) were not focused on heredity. FH was regarded as controllable and CHD as avoidable. Many participants had apparently been unaware of a family history of CHD or hypercholesterolemia prior to their own diagnosis. It was unclear how much information was communicated among relatives. While the testing of children was generally not viewed as a problem, there was some concern about young people worrying about or resisting diagnosis. Conclusion: The study suggests that people with FH do not view genes/heredity as having a deterministic role in causing heart disease and that FH is largely seen as unproblematic in the long term. Nevertheless, particular support may be needed when diagnosing children and young adults. The communication of information in families is unpredictable and this has important implications for the organization of screening programs.

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Section: Discussionmentioning

confidence: 99%

Patients’ Understandings and Experiences of Familial Hypercholesterolemia

Weiner

Durrington

2008

Public Health Genomics

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“…Transcripts were not corrected for grammar or for formality in order to capture the oral nature of the discussion. Specific questions asked by the moderators have been reported on elsewhere (see, for example, Condit et al, 2002bCondit et al, , 2003Dorgan et al, 2003;Parrott et al, 2003Parrott et al, , 2004Bates et al, 2003;Bevan et al, 2003). In this study, I took a more global view of the data.…”

Section: Participants and Proceduresmentioning

confidence: 99%

Public culture and public understanding of genetics: a focus group study

Bates

2005

Public Underst Sci

Self Cite

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As the role of genetic science in everyday life has grown, policymakers have become concerned about Americans’ understandings of this science. Much effort has been devoted to formal schooling, but less attention has been paid to the role of public culture in shaping public understanding of genetics. Research into public cultural messages about genetics has claimed that the public is likely to adopt problematic accounts, but few studies have explored the public’s articulation of these messages. This study is based on 25 focus groups convened to explore the lay public’s understanding of genetics. The study found that the public processed a greater variety of messages than assumed by previous researchers, including documentaries, non-sciencefiction films, and popular television in addition to previous researchers’ focus on science fiction and news media. The study also found that the public does not process the messages through the linear, transmission model assumed by previous research. The public processes messages about genetics complexly and critically. On the basis of these findings, the study suggests that researchers should include a greater variety of texts about genetics in their research and attend more fully to audience processing in addition to content analyses of these texts

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“…Some studies have reported low levels of public understanding of genetic concepts (e.g., location of genes) and applications (e.g., newborn screening), although participants displayed familiarity with genetic terminology (Lanie et al, 2004;Miller, 2004;Catz et al, 2005;Lea et al, 2011). In contrast, other studies have shown some public understanding of genetic concepts and genetics research, such as the meaning of a reported genetic association (Bates et al, 2003;Miller, 2004;Levitt et al, 2005). Longitudinal survey data suggest that awareness and understanding may be increasing (Miller, 2004;Singer et al, 2008).…”

Section: Introductionmentioning

confidence: 99%

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

Haga

Barry²,

Mills³

et al. 2013

Genetic Testing and Molecular Biomarkers

226

230

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Background: Variable health literacy and genetic knowledge may pose significant challenges to engaging the general public in personal genomics, specifically with respect to promoting risk comprehension and healthy behaviors. Methods: We are conducting a multistage study of individual responses to genomic risk information for Type 2 diabetes mellitus. A total of 300 individuals were recruited from the general public in Durham, North Carolina: 60% self-identified as White; 70% female; and 65% have a college degree. As part of the baseline survey, we assessed genetic knowledge and attitudes toward genetic testing. Results: Scores of factual knowledge of genetics ranged from 50% to 100% (average = 84%), with significant differences in relation to racial groups, the education level, and age. Scores were significantly higher on questions pertaining to the inheritance and causes of disease (mean score 90%) compared to scientific questions (mean score 77.4%). Scores on the knowledge survey were significantly higher than scores from European populations. Participants' perceived knowledge of the social consequences of genetic testing was significantly lower than their perceived knowledge of the medical uses of testing. More than half agreed with the statement that testing may affect a person's ability to obtain health insurance (51.3%) and 16% were worried about the consequences of testing for chances of finding a job. Conclusions: Despite the relatively high educational status and genetic knowledge of the study population, we find an imbalance of knowledge between scientific and medical concepts related to genetics as well as between the medical applications and societal consequences of testing, suggesting that more effort is needed to present the benefits, risks, and limitations of genetic testing, particularly, at the social and personal levels, to ensure informed decision making.

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What does “A gene for heart disease” mean? A focus group study of public understandings of genetic risk factors

Cited by 78 publications

References 17 publications

Patients’ Understandings and Experiences of Familial Hypercholesterolemia

Patients’ Understandings and Experiences of Familial Hypercholesterolemia

Public culture and public understanding of genetics: a focus group study

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

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