Health Literacy: The Essential Catalyst for the Responsible and Effective Translation of Genome-Based Information for the Benefit of Population Health

Sørensen, Kristine; Brand, Helmut

doi:10.1159/000324241

Cited by 18 publications

(12 citation statements)

References 39 publications

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“…Many of our respondents did not feel that scientists or the research community could or should do this. Instead, similar to the literature, respondents identified health care providers (ACMG, 2008;Christianson et al, 2010;Sorensen and Brand, 2011;Syurina et al, 2011) and public school teachers (Wefer and Sheppard, 2008;Verhoeff, et al, 2009;Dougherty et al, 2011) as the main vehicles for genomics education for the public. Other respondents echoed suggestions by SACGHS (2011) and others (Byk, 1998) that the government (e.g., Department of Health and Human Services, Department of Education) should take a leading role in this effort.…”

Section: Discussionmentioning

confidence: 84%

“…Although numerous efforts are currently underway, educating the public about genomics continues to be a challenge (Dubochet, 2009;Lea et al, 2011;SACGHS, 2011;Sorensen and Brand, 2011;Bonham et al, 2012;Leshner, 2012). Many of the same questions from early genome variation studies remain unanswered, (Brownrigg, 1999;Chen, 2001;McInerney, 2002;Hsieh, 2004;Bonham et al, 2012) including fundamental issues related to how the public should be educated; who should be responsible for this education effort; and what should be the goals and objectives of public education programs.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Genomics Education for the Public: Perspectives of Genomic Researchers and ELSI Advisors

Dressler

Smolek²,

Markey³

et al. 2014

Genetic Testing and Molecular Biomarkers

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A complex interplay of philosophical, professional, and cultural issues can create impediments to genomic education of the public. Many challenges, however, can be addressed by agreement on a guiding philosophical framework(s) and identification of a responsible entity(s) to provide leadership for developing/overseeing an appropriate infrastructure to support the coordination/integration/sharing and evaluation of educational efforts, benefiting consumers and professionals.

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Section: Discussionmentioning

confidence: 84%

Section: Introductionmentioning

confidence: 99%

Genomics Education for the Public: Perspectives of Genomic Researchers and ELSI Advisors

Dressler

Smolek²,

Markey³

et al. 2014

Genetic Testing and Molecular Biomarkers

View full text Add to dashboard Cite

show abstract

“…However, when specifically asked to whom they would not recommend the DTC service, 6 of our informants said that they were reluctant to recommend testing to people who tend to be overly anxious and overly concerned, or to children. A decisive factor in deciding whether to recommend testing or not was the educational level of the would-be test-taker, in particular their level of genetic literacy [32]. …”

Section: Resultsmentioning

confidence: 99%

Experiences of Early Users of Direct-to-Consumer Genomics in Switzerland: An Exploratory Study

Vayena

Gourna

Streuli

et al. 2012

Public Health Genomics

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Aims: This study explores attitudes, motivations and self-reported impact in connection with direct-to-consumer (DTC) genomic testing amongst a group of life scientists in Switzerland. Methods: Data were collected through: (1) a self-completion online questionnaire, and (2) semi-structured qualitative interviews. Forty participants completed the questionnaire and 10 were interviewed. Results: Curiosity was mentioned as the primary reason for undergoing testing, while less significance was attributed to receiving actionable health information. The opportunity to contribute to research ranked high as a motive for testing. Overall, participants assessed their experience with the test as positive and were willing to recommend it to others. Some reported that the testing had an impact on how they view their health, but only a third of participants planned on showing the results to health practitioners. Participants consistently referred to ‘fun’ when describing several aspects of the testing experience. The ‘fun factor’ manifested itself in different phases of the process, including the motivation for taking the test, receiving the information and putting the test results to use (including sharing and discussing it with others). This finding suggests the need to further explore the concept of personal utility in DTC genomics. Conclusions: Although this group is not representative of the broader population due to both their scientific expertise and their willingness to try out a controversial new technology, their experiences provide valuable insights into the role of personal curiosity and altruism (fostering medical research) as motivations for testing and the utility attributed to both.

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“…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. As such, it should be planned with great care.…”

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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Health Literacy: The Essential Catalyst for the Responsible and Effective Translation of Genome-Based Information for the Benefit of Population Health

Cited by 18 publications

References 39 publications

Genomics Education for the Public: Perspectives of Genomic Researchers and ELSI Advisors

Genomics Education for the Public: Perspectives of Genomic Researchers and ELSI Advisors

Experiences of Early Users of Direct-to-Consumer Genomics in Switzerland: An Exploratory Study

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

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