An onto-epistemological integration of symbolic and biological being -- Emotions as distributions of fuzzy complexes -- A resonant script for angry public rhetoric -- Osama bin Laden's righteous anger -- President Bush's national anger -- Susan Sontag's angry howl -- What should we do next?
In 2012, the World Health Organization not only condoned the creation of "super-flus" (high lethality strains with heightened transmissibility), but also urged greater dispersal of these strains among research facilities around the globe. This essay analyzes that decision process using an updated theory of logos and pathos that incorporates contemporary understandings of emotion and the human brain into prescriptions for public deliberative decision-making processes. That analysis shows that, because the decision process was necessarily executed through the affective reasoning processes of the 22 narrowly-selected individuals invited to the meeting, it could not provide an optimal decision process. The essay therefore proposes that the World Health Organization should adopt an on-line, open-access discussion process for deliberating about major decisions about world health policies. The basis for the decision in affect (pathos) rather than in ostensible logos is demonstrated by textual and contextual evidence produced by the participants.
AbstractFor over two decades, scholars in the humanities and social sciences have attended warily and thoughtfully to the growing influence of biological and especially genetics‐based explanations of human behavior. Concern about genetic determinism has formed a focal point of this attention, because it was presumed to provide a lynchpin for discriminatory effects arising from genetics technologies. Substantial empirical research has now demonstrated that genetic determinism is in fact linked to discriminatory attitudes including prejudice, Social Dominance Orientation, sexism, and racism. Fortunately, however, the research has also indicated that most lay people's deployment of genetic determinism is both limited and strategic, primarily serving self‐interests such as protecting valued behaviors (which are not health conducive) or avoiding blame. The disjunction between predictions based on existing social theories of discourse and empirical research on individual‐level practices highlights the need for a theoretical integration of biological biases, individual actions, and social structures in future social theories, especially theories about health behaviors, science studies, and public understanding of science.
Intro -- Contents -- Preface: Toward Consideration of the Rhetorical Culture of Equality -- Acknowledgments -- 1. Introduction: The Story of Equality -- Part One: The Rhetorical Foundations of American Equality -- 2. The British Rhetoric of Revolt, 1760-1774 -- 3. The Anglo-American Revolutionary Rhetoric, 1774-1789 -- 4. The African-American Rhetoric of Equal Rights, 1774-1860 -- Part Two: Rhetorical Integrations -- 5. Separate But Equal, 1865-1896 -- 6. Integrated Equality, 1896-1960 -- 7. The New Equalities, 1960-1990 -- Afterword -- Research and Bibliography Essay -- Appendix: Reference List of Newspapers and Magazines -- Notes -- Index.
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<b><i>Background/Aims:</i></b> National guidelines endorse using evidence-based tools to identify those at risk for hereditary breast and ovarian cancer (HBOC). This study aimed to evaluate whether women deemed not to be at increased risk of being a <i>BRCA</i> mutation carrier; the majority of those screened, recall, understand and accept the implications of these results for breast cancer risk. <b><i>Methods:</i></b> We conducted an online survey with women (<i>n</i> = 148) who screened negative on a brief HBOC screener. <b><i>Results:</i></b> While women tended to accept HBOC screener as accurate (range 9–45; mean 32, SD 5.0), less than half (43%) accurately recalled their result. Only 52% understood that they were at low risk of carrying a mutation, and just 34% correctly understood their breast cancer risk. African American women were less likely to recall (33 vs. 53% respectively, OR 0.5, <i>p</i> = 0.03), understand (42 vs. 63% respectively, OR 0.4, <i>p</i> = 0.02), and accept (mean 31 vs. 33 respectively, β –2.1, <i>p</i> = 0.02) the result compared to Whites. <b><i>Conclusions:</i></b> Our findings show that those at low risk of carrying a <i>BRCA1/2</i> mutation had limited understanding of the distinction between mutation risk and breast cancer risk. Theory-based communication strategies are needed to increase the understanding of the implications of being at low risk for hereditary cancers.
<b><i>Objectives:</i></b> Genomic information will increasingly be used to aid in the prevention, diagnosis, and treatment of disease. Several national initiatives are paving the way for this new reality, while also promoting new models of participant-engaged research. We compare the opinions of research participants in a cancer registry, human genetic researchers, and institutional review board (IRB) professionals about the return of individual-level genetic results (ROR). <b><i>Methods:</i></b> Online surveys were administered to participants in a cancer registry (<i>n</i> = 450) and overlapping questions were compared to our previous online national surveys of human genetic researchers (<i>n</i> = 351) and IRB professionals (<i>n</i> = 208). <b><i>Results:</i></b> The majority of respondents agreed that researchers have an obligation to return individual results when they would affect a participant's health. While 77% of registry participants favored ROR if the researcher feels the participant might be interested in the results, only 30% of the IRB professionals and 25% of the genetic researchers agreed with this statement. <b><i>Conclusions:</i></b> Significant differences emerged between the stakeholder groups in several ROR scenarios. Policies that are acceptable to participants, researchers and IRBs, and that ensure human subject protections and facilitate research are needed.
<b><i>Background:</i></b> With the arrival of large-scale population-based genomic research studies, such as the Precision Medicine Initiative (PMI), the question of how to best consent participants is significant, and in an era of patient-centered research, few studies have evaluated participants' preferences about re-consent and broad consent. Using quantitative methods, this study evaluates participants' views regarding the acceptability of re-consent and broad consent in subjects from the Participant Issues Project. <b><i>Methods:</i></b> A total of 450 participants were recruited from a cancer genetics registry, including cancer patients, their relatives, and controls. Participants completed a secure online survey. <b><i>Results:</i></b> Most participants endorsed re-consent when investigating an unrelated health condition or sharing their de-identified data with an investigator at a different institution. Notification rather than re-consent was preferred when studying a different gene but the same disease. Over 80% of respondents endorsed re-consent when parents of a child gave the original consent and the child has now reached adulthood. Preferences for some scenarios varied by history of cancer at baseline, gender, stage of cancer, or case versus control group. The large majority of participants preferred the option to select broad consent categories of research. <b><i>Conclusion:</i></b> Understanding research participants' preferences, including their views on the need for re-consent, are critical to the success of the PMI.