Influence in science dialogue: Individual attitude changes as a result of dialogue between laypersons and scientists

Zorn, Theodore E.; Roper, Juliet; Weaver, C. Kay; Rigby, Colleen

doi:10.1177/0963662510386292

Cited by 30 publications

(23 citation statements)

References 39 publications

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“…For this study personal utility is defined as benefits or harms that are manifested outside of medical context and may indirectly affect medical outcomes . …”

Section: Resultsmentioning

confidence: 99%

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‘Information is information’: a public perspective on incidental findings in clinical and research genome‐based testing

et al. 2013

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Background The potential for genomic incidental findings is increasing with the use of genome-based testing. At the same time approaches to clinical decision making are shifting to shared decision-making models involving both the healthcare community and the public. The public’s voice has been nearly absent in discussions on managing incidental findings. Methods We conducted 9 focus groups and 9 interviews (N=63) with a broad cross-section of lay public groups to elucidate public viewpoints on incidental findings that could occur as a result of genome-based testing in clinical and research situations. Data were analyzed using qualitative content analysis. Results Participants wanted incidental findings disclosed to them whether or not these were clinical or research findings. Participants used different terms to define and describe incidental findings; they wanted to know that incidental findings are possible and be given a choice to learn about them. Personal utility was an important reason for disclosure, and participants believed that managing information is a shared responsibility between professionals and themselves. Conclusion Broad public input is needed in order to understand and incorporate the public’s perspective on management of incidental findings as disclosure guidelines and policies are developed in clinical and research settings.

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“…For this study personal utility is defined as benefits or harms that are manifested outside of medical context and may indirectly affect medical outcomes . …”

Section: Resultsmentioning

confidence: 99%

“…A number following the P signifies multiple participants input to the specific quote. b For this study personal utility is defined as benefits or harms that are manifested outside of medical context and may indirectly affect medical outcomes (32).…”

Section: Explanation For Why Things Happenmentioning

confidence: 99%

‘Information is information’: a public perspective on incidental findings in clinical and research genome‐based testing

et al. 2013

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“…The Royal Society Survey (2006) in the United Kingdom, for example, lists 11 different modes of engagement, but the scientists in our sample overwhelmingly engage in outreach to children and the public in events organized on campus. And while dialogue or interactive modes in which citizens work actively with science knowledge is idealized in the practitioner and scholarly literature (Zorn et al, 2010), elite scientists in the United States generally engage in one-way presentations to the public. Narratives of outreach differ by discipline.…”

Section: Discussionmentioning

confidence: 99%

Narratives of Science Outreach in Elite Contexts of Academic Science

Johnson

Ecklund

Lincoln

2013

Science Communication

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Using data from interviews with 133 physicists and biologists working at elite research universities in the United States, we analyze narratives of outreach. We identify discipline-specific barriers to outreach and gender-specific rationales for commitment. Physicists view outreach as outside of the scientific role and a possible threat to reputation. Biologists assign greater value to outreach, but their perceptions of the public inhibit commitment. Finally, women are more likely than men to participate in outreach, a commitment that often results in peer-based informal sanctions. The study reveals how the cultural properties of disciplines, including the status of women, shape the meaning and experience of science outreach.

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“…However, rather than considering this divergence as a barrier to dialogue, we propose that, as presented in the thematic matrix (Table 2), the questions and professional and lay public responses can serve as a topic guide for future inter-stakeholder dialogue focused on increasing understanding or shared meanings between these groups. Such an effort could raise awareness of takenfor-granted assumptions and encourage future collaboration that, in turn, is needed to inform the best practice regarding the disclosure of incidental genomic findings that involve children (Zorn et al 2012).…”

Section: Discussionmentioning

confidence: 99%

The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practice

et al. 2013

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Although there are numerous position papers on the issues and challenges surrounding disclosure of incidental genomic findings involving children, there is very little research. To fill this gap, the purpose of this study was to explore the perspectives of multiple professional (N=103) and public (N=63) stakeholders using both interviews and focus groups. Using qualitative analysis, we identified one overarching theme, "It's hard for us; it's hard for them," and three subthemes/questions: "What to disclose?," "Who gets the information?," and "What happens later?" Perspectives differed between professional (Institutional Review Board chairs, clinicians, and researchers) and public stakeholders. While professionals focused on the complexities of what to disclose, the lay public stated that parents should have all information laid out for them. Professionals pondered multiple parent and child situations, while the public identified parents as informational gatekeepers who know their children best. Professionals described the potential requirement for follow-up over time as a logistical "nightmare," while the public believed that parents have the responsibility for managing their children's health information over time.However, the parent role as gatekeeper was seen as time limited and in need of professional support and backup. Our findings present a case for needed dialogue around what we propose as an "ethically important moment," with the goal of protecting and respecting the viewpoints of all stakeholders when policies regarding children are developed.

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Influence in science dialogue: Individual attitude changes as a result of dialogue between laypersons and scientists

Cited by 30 publications

References 39 publications

‘Information is information’: a public perspective on incidental findings in clinical and research genome‐based testing

‘Information is information’: a public perspective on incidental findings in clinical and research genome‐based testing

Narratives of Science Outreach in Elite Contexts of Academic Science

The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practice

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