Browsing by Subject "Bioethics"
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Item A 4-Site Public Deliberation Project on the Acceptability of Youth Self-Consent in Biomedical HIV Prevention Trials: Assessment of Facilitator Fidelity to Key Principles(JMIR, 2025-02-13) Draucker, Claire Burke; Carrión, Andrés; Ott, Mary A.; Hicks, Ariel I.; Knopf, Amelia; School of NursingBackground: Public deliberation is an approach used to engage persons with diverse perspectives in discussions and decision-making about issues affecting the public that are controversial or value laden. Because experts have identified the need to evaluate facilitator performance, our research team developed a framework to assess the fidelity of facilitator remarks to key principles of public deliberation. Objective: This report describes how the framework was used to assess facilitator fidelity in a 4-site public deliberation project on the acceptability of minor self-consent in biomedical HIV prevention research. Methods: A total of 88 individuals participated in 4 deliberation sessions held in 4 cities throughout the United States. The sessions, facilitated by 18 team members, were recorded and transcribed verbatim. Facilitator remarks were highlighted, and predetermined coding rules were used to code the remarks to 1 of 6 principles of quality deliberations. A variety of display tables were used to organize the codes and calculate the number of facilitator remarks that were consistent or inconsistent with each principle during each session across all sites. A content analysis was conducted on the remarks to describe how facilitator remarks aligned or failed to align with each principle. Results: In total, 735 remarks were coded to one of the principles; 516 (70.2%) were coded as consistent with a principle, and 219 (29.8%) were coded as inconsistent. A total of 185 remarks were coded to the principle of equal participation (n=138, 74.6% as consistent; n=185, 25.4% as inconsistent), 158 were coded to expression of diverse opinions (n=110, 69.6% as consistent; n=48, 30.4% as inconsistent), 27 were coded to respect for others (n=27, 100% as consistent), 24 were coded to adoption of a societal perspective (n=11, 46% as consistent; n=13, 54% as inconsistent), 99 were coded to reasoned justification of ideas (n=81, 82% as consistent; n=18, 18% as inconsistent), and 242 were coded to compromise or movement toward consensus (n=149, 61.6% as consistent; n=93, 38.4% as inconsistent). Therefore, the counts provided affirmation that most of the facilitator remarks were aligned with the principles of deliberation, suggesting good facilitator fidelity. By considering how the remarks aligned or failed to align with the principles, areas where facilitator fidelity can be strengthened were identified. The results indicated that facilitators should focus more on encouraging quieter members to participate, refraining from expressing personal opinions, promoting the adoption of a societal perspective and reasoned justification of opinions, and inviting deliberants to articulate their areas of common ground. Conclusions: The results provide an example of how a framework for assessing facilitator fidelity was used in a 4-site deliberation project. The framework will be refined to better address issues related to balancing personal and public perspectives, managing plurality, and mitigating social inequalities.Item Administrators' perspectives on ethical issues in long-term care research(2008) Hickman, Susan E.; Cartwright, Juliana C.; Young, Heather M.ETHICAL ISSUES ARE A SIGNIFICANT potential barrier to much-needed research in long-term care settings. LTC stakeholder perspectives are largely absent from the development of regulation and guidelines. Fifteen long-term care administrators were interviewed as part of a study of ethical issues in community-based, long-term care research. Established qualitative procedures for conducting content analysis were used to organize the data. Findings suggest that existing mechanisms to protect human subjects do not take into account important differences between academic and long-term care settings. The full potential of LTC research will not be realized until supportive processes to enhance human subjects protections are developed in a way that is reflective of the LTC environment.Item Altered standards of care for health care providers in the pandemic influenza(Indiana University, 2009) Kinney, Eleanor D.; McCabe, Heather A.; Gilbert, Amy Lewis; Shisler, Janna JoPandemic influenza will pose tremendous challenges to health care providers, state public health authorities, and the public. All will have to conduct business under the most adverse of circumstances. It will be difficult for providers to meet the customary legal standards of care imposed by state and federal regulatory authorities, as well as the common law tort system. This white paper will explore the legal issues associated with altered standards of care in pandemic influenza.Item Alzheimer's Disease Narratives and the Myth of Human Being(2012-12-11) Rieske, Tegan Echo; Schultz, Jane E.; Johnson, Karen Ramsay; Tilley, John J.The ‘loss of self’ trope is a pervasive shorthand for the prototypical process of Alzheimer's disease (AD) in the popular imagination. Turned into an effect of disease, the disappearance of the self accommodates a biomedical story of progressive deterioration and the further medicalization of AD, a process which has been storied as an organic pathology affecting the brain or, more recently, a matter of genetic calamity. This biomedical discourse of AD provides a generic framework for the disease and is reproduced in its illness narratives. The disappearance of self is a mythic element in AD narratives; it necessarily assumes the existence of a singular and coherent entity which, from the outside, can be counted as both belonging to and representing an individual person. The loss of self, as the rhetorical locus of AD narrative, limits the privatization of the experience and reinscribes cultural storylines---storylines about what it means to be a human person. The loss of self as it occurs in AD narratives functions most effectively in reasserting the presence of the human self, in contrast to an anonymous, inhuman nonself; as AD discourse details a loss of self, it necessarily follows that the thing which is lost (the self) always already existed. The private, narrative self of individual experience thus functions as proxy to a collective human identity predicated upon exceptionalism: an escape from nature and the conditions of the corporeal environment.Item Autonomy and consent in biobanks(2010-02) Schwartz, Peter H.Item A Bibliometric Analysis of an International Research Ethics Trainee Program(2013-12) Fix, Jonathan; Odell, Jere D.; Sina, Barbara; Meslin, Eric M.; Goodman, Ken; Upshur, RossWe used bibliometric analysis to evaluate the citations associated with publications by trainees in the Fogarty International Center’s International Research Ethics Education and Curriculum Development program. Papers published between 2004 and 2008 were identified for analysis. The outcome measures were total citations, h-index, and i-10. A total of 328 manuscripts were identified, with a yearly average of 66 publications and 363 citations. The median number of citations per paper is 3 (IQR Q1–Q3:6). 12.6% (n = 53) of papers were cited over 10 times and the h-index is 22, indicating that 22 papers had been cited at least 22 times. The data indicate that trainees have been productive and contributed to the scholarly literature. Future studies to benchmark this performance with other bioethics education programs are required to make interpretation of citation analysis more meaningful.Item Building the case for actionable ethics in digital health research supported by artificial intelligence(Springer Nature, 2019-07-17) Nebeker, Camille; Torous, John; Bartlett Ellis, Rebecca J.; School of NursingThe digital revolution is disrupting the ways in which health research is conducted, and subsequently, changing healthcare. Direct-to-consumer wellness products and mobile apps, pervasive sensor technologies and access to social network data offer exciting opportunities for researchers to passively observe and/or track patients ‘in the wild’ and 24/7. The volume of granular personal health data gathered using these technologies is unprecedented, and is increasingly leveraged to inform personalized health promotion and disease treatment interventions. The use of artificial intelligence in the health sector is also increasing. Although rich with potential, the digital health ecosystem presents new ethical challenges for those making decisions about the selection, testing, implementation and evaluation of technologies for use in healthcare. As the ‘Wild West’ of digital health research unfolds, it is important to recognize who is involved, and identify how each party can and should take responsibility to advance the ethical practices of this work. While not a comprehensive review, we describe the landscape, identify gaps to be addressed, and offer recommendations as to how stakeholders can and should take responsibility to advance socially responsible digital health research.Item Child safety, absolute risk, and the prevention paradox(2012) Schwartz, Peter H.While child-saftey proposals aim to improve child safety, their possible impact is unclear since there’s been so little discussion of the amount of absolute risk and risk reduction involved in each. And while precise figures are lacking, rough estimates indicate that the magnitudes are quite small. I will argue that this risk and benefit data raises important questions about the proposals, including whether parents might reasonably believe that the small absolute risk reduction offered by the proposed changes does not justify the attendant burdens. This possibility – termed the “prevention paradox” in other contexts – highlights ethical and theoretical challenges in this area of public health.Item Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes(Elsevier, 2023) Halverson, Colin M. E.; Penwell, Heather L.; Francomano, Clair A.; Medicine, School of MedicinePatients with hypermobile Ehlers Danlos Syndrome often experience psychological distress resulting from the perceived hostility and disinterest of their clinicians. We conducted 26 in-depth interviews with patients to understand the origins of this trauma and how it could be addressed in practice. We found that the cumulative effects of numerous negative encounters lead patients to lose trust in their healthcare providers and the healthcare system, and to develop acute anxiety about returning to clinic to seek further care. We describe this as clinician-associated traumatization. Ultimately, our interviewees described the result of this traumatization as worse – but preventable – health outcomes.Item Comparative Risk: Good or Bad Heuristic?(Taylor & Francis, 2016-05) Schwartz, Peter H.; Department of Medicine, School of MedicineHeuristics and biases infect all human thought, leading to irrational thinking and behavior. Bioethics must recognize this psychological reality and develop new models for evaluating and supporting autonomous choice, as Blumenthal-Barby (2016) argues (Blumenthal-Barby 2016). Simply trying to eradicate heuristics and biases from medical decisions will not work and is deeply misguided. In many situations, a heuristic or bias can provide a shortcut to an effective decision (Gigerenzer 2008) or can counter the impact of other heuristics and biases. It is often impossible to determine whether a heuristic or bias harms or helps a decision, because of the complexity of thought and the difficulty of defining and measuring the quality of a decision or its rationality. The debate over whether patients should receive comparative risk information highlights these practical, ethical, and conceptual quandaries. Some experts have argued that patients facing certain types of choices should not be told whether their risk is above or below average, because this information may trigger a bias (Fagerlin et al. 2007). But careful consideration shows that the comparative risk heuristic can usefully guide decisions and improve their quality or rationality. Building on an earlier paper of mine (Schwartz 2009), I will argue here that doctors and decision aids should provide comparative risk information to patients, even while further research is conducted.*