Background: Democratic deliberation (DD), a strategy to foster co-learning among researchers and communities, could be applied to gain informed public input on health policies relating to genomic translation.
Purpose: We evaluated the quality of DD for gaining informed community perspectives regarding targeting communities of African Ancestry (AAn) for Hereditary Breast and Ovarian Cancer (HBOC) screening in Georgia.
Methods: We audiotaped a 2.5 day conference conducted via zoom in March 2021 to examine indicators of deliberation quality based on three principles: (1) inclusivity (diverse viewpoints based on participants' demographics, cancer history, and civic engagement), (2) consideration of factual information (balanced and unbiased expert testimonies, participant perceived helpfulness), and (3) deliberation (speaking opportunities, adoption of a societal perspective on the issue, reasoned justification of ideas, and participant satisfaction).
Results: We recruited 24 participants who reflected the diversity of views and life experiences of citizens of AAn living in Georgia. The expert testimony development process we undertook for creating balanced factual information was endorsed by experts' feedback. Deliberation process evaluation showed that while participation varied (average number of statements = 24, range: 3-62), all participants contributed. Participants were able to apply expert information and take a societal perspective to deliberate on the pros and cons of targeting individuals of AAn for HBOC screening in Georgia.
Conclusions: The rigorous process of public engagement using deliberative democracy approach can successfully engage a citizenry with diverse and well-informed views, do so in a relatively short time frame and yield perspectives based on high quality discussion.
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http://dx.doi.org/10.3389/fpubh.2022.984926 | DOI Listing |
J Prev Interv Community
January 2025
Department of Psychology, California State Polytechnic University, Humboldt, Arcata, CA, USA.
Democratic innovations offer a promising set of interventions to empower citizens, reduce polarization, and reimagine participatory governance. This article examines the Petaluma Fairgrounds Advisory Panel (PFAP), a citizens assembly convened to deliberate the future of a locally significant property. This qualitative study consisted of 15 panelist interviews exploring panelist experiences of nine equity strategies incorporated into the PFAP design as well as broader themes around how equity was conceptualized.
View Article and Find Full Text PDFAJOB Empir Bioeth
December 2024
Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Background: Nonhuman animals are regularly enhanced genomically with CRISPR and other gene editing tools as scientists aim at better models for biomedical research, more tractable agricultural animals, or animals that are otherwise well suited to a defined purpose. This study investigated how genome editors and policymakers perceived ethical or policy benefits and drawbacks for animal enhancement and how perceived benefits and drawbacks are alike, or differ from, those for human genome editing.
Methods: We identified scientists through relevant literature searches as well as conference presentations.
Genet Med Open
July 2024
Peter O'Donnell Jr. School of Public Health, University of Texas Southwestern Medical Center, Dallas, TX.
Purpose: A primary challenge in clinical genetics is accurate interpretation of identified variants and relaying the information to patients and providers. Inconsistencies around handling variant reclassifications and notifying patients, combined with the lack of prescriptive guidelines on re-evaluation, reanalysis, and return of variants, has created practice challenges. Although relevant empirical work has emerged, the scope and outcomes of this research have not been characterized.
View Article and Find Full Text PDFTransgenic Res
December 2024
Re-Imagine Europa, Brussels, Belgium.
Given the complexity of agricultural problems, it is essential to develop acceptable solutions for various stakeholders with diverse knowledge, viewpoints, and preferences. However, European public opinion has become highly polarized, making constructive discussions on these issues difficult. We present the results of the narrative analysis of media debate on new genomic techniques.
View Article and Find Full Text PDFTranscult Psychiatry
October 2024
Division of Social & Transcultural Psychiatry, Department of Psychiatry, McGill University, Montreal, Canada.
This essay introduces a thematic issue of presenting selected papers from the 2022 McGill Advanced Study Institute in Cultural Psychiatry on "The Fragility of Truth: Social Epistemology in a Time of Polarization and Pandemic." The COVID-19 pandemic, political polarization, and the climate crisis have revealed that large segments of the population do not trust the best available knowledge and expertise in making vital decisions regarding their health, the governance of society, and the fate of the planet. What guides information-seeking, trust in authority, and decision-making in each of these domains? Articles in this issue include case studies of the dynamics of misinformation and disinformation; the adaptive functions and pathologies of belief, paranoia, and conspiracy theories; and strategies to foster and maintain diverse knowledge ecologies.
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