Community engagement with genetics: public perceptions and expectations about genetics research

Etchegary, Holly; Green, Jane; Parfrey, Patrick S.; Street, Catherine; Pullman, Daryl

doi:10.1111/hex.12122

Cited by 35 publications

(58 citation statements)

References 33 publications

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“…Our study and findings advance the work of Luque et al (Koskan et al 2012;Luque et al 2012) and Noel-Thomas (Susman 2010) who describe and anecdotally demonstrate that early engagement such as development of community advisory boards and conducting community tours of biobanks both informs the public and helps them make more knowledgeable decisions about biobanking. Findings from this study add to accumulating evidence from surveys of the public in Canada (Etchegary et al 2013) and focus groups in the United States (Jamal et al 2013) that report an expectation of ongoing contact with investigators who collect genomic information about research participants. To this, we add the model of ongoing partnership for community research as a demonstration of the type of research capacity that can be built with communities.…”

Section: Discussionsupporting

confidence: 54%

Increasing Participation in Genomic Research and Biobanking Through Community‐Based Capacity Building

Cohn

Husamudeen

Larson

et al. 2014

Journal of Genetic Counseling

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Achieving equitable minority representation in genomic biobanking is one of the most difficult challenges faced by researchers today. Capacity building—a framework for research that includes collaborations and on-going engagement—can be used to help researchers, clinicians and communities better understand the process, utility, and clinical application of genomic science. The purpose of this exploratory descriptive study was to examine factors that influence the decision to participate in genomic research, and identify essential components of capacity building with a community at risk of being under-represented in biobanks. Results of focus groups conducted in Central Harlem with 46 participants were analyzed by a collaborative team of community and academic investigators using content analysis and AtlisTi. Key themes identified were: (1) the potential contribution of biobanking to individual and community health, for example the effect of the environment on health, (2) the societal context of the science, such as DNA criminal databases and paternity testing, that may affect the decision to participate, and (3) the researchers’ commitment to community health as an outcome of capacity building. These key factors can contribute to achieving equity in biobank participation, and guide genetic specialists in biobank planning and implementation.

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Section: Discussionsupporting

confidence: 54%

Increasing Participation in Genomic Research and Biobanking Through Community‐Based Capacity Building

Cohn

Husamudeen

Larson

et al. 2014

Journal of Genetic Counseling

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“…Although these reader comments demonstrate the strength of disagreement and anger felt by some readers they perhaps also suggest a misunderstanding or lack of knowledge of the difference between the suggestion that genetics plays an important role in learning abilities and achievement (as suggested by Cummings) and the misuse and abuse of genetics for harm by the Nazis. This lack of knowledge, prevalence of misunderstanding, hostility and fear around genetics was one of the key points to emerge from the literature (Condit 2001, 2010; Etchegary et al 2013; Asbury and Plomin 2013; Asbury 2015; Tabery 2015) so it is valuable to see it demonstrated clearly in such a public arena. It is worth remembering that Cummings’ comments on the role of genetics are largely based on reliable scientific evidence (even if somewhat inflated by the reporting in this article) and are not in any sense extreme or unsubstantiated views.…”

Section: Discussionmentioning

confidence: 99%

“…On the whole, existing research suggests that both the general public, and education professionals, lack comprehensive knowledge about genetics, although educational professionals have so far been relatively accurate when asked to what extent they believe nature and nurture influence learning behaviour (Condit 2001, 2010; Walker and Plomin 2005; Etchegary et al 2013). …”

Section: Introductionmentioning

confidence: 99%

“…Etchegary et al (2013), looked at public opinions about genetics in a healthcare context in Canada, and found that participants felt they did not know enough but were open to the potential value of genetic information in their own healthcare. In this study participants demonstrated a positive view of advances in genetic science (Etchegary et al 2013). In a review of the literature on public perceptions of genetics Condit (2001) found that the public tends to approach advances in genetics with ‘cautious optimism’.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

‘Mr Cummings clearly does not understand the science of genetics and should maybe go back to school on the subject’: an exploratory content analysis of the online comments beneath a controversial news story

Crosswaite

Asbury

2016

Life Sci Soc Policy

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An article published in the UK Guardian on 11/10/2013 with the headline ‘Genetics outweighs teaching, Gove advisor tells his boss’ reported a leaked document written by special advisor Dominic Cummings to the then UK Secretary of State for Education, Michael Gove. The article generated 3008 on-line reader comments from the public. These reader comments offer a naturalistic opportunity to understand public opinion regarding Cummings’ controversial suggestions and ideas. We conducted a content analysis of n = 800 reader comments, coding them on the basis of level of agreement with the ideas and opinions expressed in the article. Of all aspects of education mentioned, Cummings’ reported views on genetics were commented upon most frequently and were subject to the most opposition from commenters, but also the most support. Findings offer some insight into the challenges involved in conducting public discourse about the relevance of genes in education. We discuss the accuracy with which Cummings’ views were presented and the effect this may have had on reader responses to the points being raised.

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“…Etchegary et al found that participants across all sections of their Canadian study on the perceptions and expectations of genetics research had concerns about genetic privacy, including who would have access to their data and how it would be protected. 17 In the US, Kerath et al found that respondents to their survey on participation in genetics research were most concerned about the privacy of their medical and genetic information. 18 Similarly in Europe, public support for biobanks was shown to be lower for those with high levels of concern about privacy, and privacy concerns were frequently mentioned in focus groups on the topic.…”

Section: The Genome As Personal and Privatementioning

confidence: 99%

The human genome as public: Justifications and implications

Bayefsky

2016

Bioethics

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Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome - its common nature - has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage (CH) framework and the common resource (CR) framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research.

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Community engagement with genetics: public perceptions and expectations about genetics research

Abstract: Background Knowledge of molecular biology and genomics continues to expand rapidly, promising numerous opportunities for improving health. However, a key aspect of the success of genomic medicine is related to public understanding and acceptance.

Cited by 35 publications

References 33 publications

Increasing Participation in Genomic Research and Biobanking Through Community‐Based Capacity Building

Increasing Participation in Genomic Research and Biobanking Through Community‐Based Capacity Building

‘Mr Cummings clearly does not understand the science of genetics and should maybe go back to school on the subject’: an exploratory content analysis of the online comments beneath a controversial news story

The human genome as public: Justifications and implications

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