Genome-Based Health Literacy: A New Challenge for Public Health Genomics

Syurina, Elena V.; Branković, Ivan; Probst‐Hensch, Nicole; Brand, Angela

doi:10.1159/000324238

Cited by 71 publications

(70 citation statements)

References 75 publications

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“…The adoption of personalized medicine will be driven, in part, by the public's understanding and interest in new clinical genetic applications (Syurina et al, 2011). However, this area has been understudied with respect to the association of genetic knowledge, attitudes about genetic testing, actual comprehension of personal genomic risks and its impact on health behaviors.…”

Section: Discussionmentioning

confidence: 99%

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

Haga

Barry²,

Mills³

et al. 2013

Genetic Testing and Molecular Biomarkers

223

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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Section: Discussionmentioning

confidence: 99%

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

Haga

Barry²,

Mills³

et al. 2013

Genetic Testing and Molecular Biomarkers

223

230

View full text Add to dashboard Cite

show abstract

“…There is a growing field of health literacy and numeracy specifically as they relate to genetics information, concepts, and the potential for motivating behavioral changes [115][116][117][118] . Data are limited but increasing [119] .…”

Section: Health Literacy Numeracy and Genetics Of Fisrmentioning

confidence: 99%

Genetics of Food Intake Self-Regulation in Childhood: Literature Review and Research Opportunities

2013

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Pediatric obesity results from a daily energy imbalance between intake and expenditure, an imbalance potentially as slight as ∼30-50 kcal/day (e.g., a few extra sips of cola or bites of a cookie). That an ‘energy gap' so small may be so powerful suggests the importance of understanding mechanisms of food intake self-regulation (FISR). This review focuses on 4 behavioral indices of FISR in childhood: (1) eating in the absence of hunger; (2) eating rate; (3) caloric compensation and satiety responsiveness, and (4) food responsiveness. Evidence from pediatric samples around the world indicates that these traits are associated with body mass index, are heritable, and are linked to polymorphisms in the FTO gene. We review these data, also discussing their relevance to practical issues of parental feeding styles, portion sizes, and health literacy and numeracy. Research gaps and opportunities for future investigation are discussed. Multidisciplinary approaches and study designs that can address gene-environment interactions are needed to advance the science of FISR and stimulate new avenues for childhood obesity prevention.

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“…For example, more classical informed consent may be adequate for the clinical context and appropriate public education campaigns, and opt-out or opt-in schemes may be best for population-based programmes; these should be planned before GBIT are introduced into public health and monitored accordingly. In both contexts, improving genomic-based literacy for the public (and all stakeholders) and offering understandable and balanced information regarding the testing programmes will play a central role in allowing for fully informed consent [32]. Moreover, health-literacy can be viewed from a public health perspective as ‘public health literacy' [33] of which GBIT-literacy may be considered one aspect.…”

Section: Principles On Which To Base the Discussion Regarding The Ethmentioning

confidence: 99%

The Ethical Introduction of Genome-Based Information and Technologies into Public Health

Howard

Swinnen

Douw

et al. 2013

Public Health Genomics

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With the human genome project running from 1989 until its completion in 2003, and the incredible advances in sequencing technology and in bioinformatics during the last decade, there has been a shift towards an increase focus on studying common complex disorders which develop due to the interplay of many different genes as well as environmental factors. Although some susceptibility genes have been identified in some populations for disorders such as cancer, diabetes and cardiovascular diseases, the integration of this information into the health care system has proven to be much more problematic than for single gene disorders. Furthermore, with the 1000$ genome supposedly just around the corner, and whole genome sequencing gradually being integrated into research protocols as well as in the clinical context, there is a strong push for the uptake of additional genomic testing. Indeed, the advent of public health genomics, wherein genomics would be integrated in all aspects of health care and public health, should be taken seriously. Although laudable, these advances also bring with them a slew of ethical and social issues that challenge the normative frameworks used in clinical genetics until now. With this in mind, we highlight herein 5 principles that are used as a primer to discuss the ethical introduction of genome-based information and genome-based technologies into public health.

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Genome-Based Health Literacy: A New Challenge for Public Health Genomics

Cited by 71 publications

References 75 publications

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

Genetics of Food Intake Self-Regulation in Childhood: Literature Review and Research Opportunities

The Ethical Introduction of Genome-Based Information and Technologies into Public Health

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