Browsing by Subject "Bioethics"

Now showing 1 - 10 of 68
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    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.
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    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 Jo
    Pandemic 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.
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    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.
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    Autonomy and consent in biobanks
    (2010-02) Schwartz, Peter H.
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    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, Ross
    We 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.
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    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 Nursing
    The 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.
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    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.
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    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 Medicine
    Patients 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.
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    Comparative Risk: Good or Bad Heuristic?
    (Taylor & Francis, 2016-05) Schwartz, Peter H.; Department of Medicine, School of Medicine
    Heuristics 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.*
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    Compassion and Vigilance: Investigators' Strategies To Manage Ethical Concerns in Palliative and End-of-Life Research
    (2012) Hickman, Susan E.; Cartwright, Juliana C.; Nelson, Christine A.; Knafl, Kathleen
    Background Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections. Methods A qualitative case-study design was used to follow 43 end-of-life studies from proposal development through the review process and implementation. Investigators participated in semi-structured telephone interviews and provided document data regarding their experiences with grant and IRB reviews. Using constant comparative analysis within and across cases, the investigators identified commonly encountered and unique concerns and strategies for managing these concerns. Findings Investigator strategies fell into two broad categories: 1) Recruitment and consent strategies related to subject identification and enrollment; and 2) Protocol-related strategies related to the process of data collection. These strategies shared the overarching meta-themes of compassion, as evidenced by a heightened sensitivity to the needs of the population, coupled with vigilance, as evidenced by close attention to the possible effects of study participation on the participants' well-being, clinical care, and the needs of research staff. Conclusions Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.