AJOB Empirical Bioethics最新文献

Background: Policy decisions about childhood vaccination require consideration of multiple, sometimes conflicting, public health and ethical imperatives. Examples of these decisions are whether vaccination should be mandatory and, if so, whether to allow for non-medical exemptions. In this article we argue that these policy decisions go beyond typical public health mandates and therefore require democratic input.

Methods: We report on the design, implementation, and results of a deliberative public forum convened over four days in Ontario, Canada, on the topic of childhood vaccination.

Results: 25 participants completed all four days of deliberation and collectively developed 20 policy recommendations on issues relating to mandatory vaccinations and exemptions, communication about vaccines and vaccination, and AEFI (adverse events following immunization) compensation and reporting. Notable recommendations include unanimous support for mandatory childhood vaccination in Ontario, the need for broad educational communication about vaccination, and the development of a no-fault compensation scheme for AEFIs. There was persistent disagreement among deliberants about the form of exemptions from vaccination (conscience, religious beliefs) that should be permissible, as well as appropriate consequences if parents do not vaccinate their children.

Conclusions: We conclude that conducting deliberative democratic processes on topics that are polarizing and controversial is viable and should be further developed and implemented to support democratically legitimate and trustworthy policy about childhood vaccination.

Historically nurses have lacked significant input in end-of-life decision-making, despite being an integral part of care. Nurses experience negative feelings and moral conflict when forced to aggressively deliver care to patients at the EOL. As a result, nurses participate in slow codes, described as a limited resuscitation effort with no intended benefit of patient survival. The purpose of this study was to explore and understand the process nurses followed when making decisions about participation in limited resuscitation. Five core categories emerged that describe this theory: (1) recognition of patient and family values at the EOL; (2) stretching time and reluctance in decision-making; (3) harm and suffering caused by the physical components of CPR; (4) nurse's emotional and moral response to delivering aggressive care, and; (5) choosing limited resuscitation with or without a physician order. Several factors in end-of-life disputes contribute to negative feelings and moral distress driving some nurses to perform slow codes in order to preserve their own moral conflict, while other nurses refrain unless specifically ordered by physicians to provide limited care through tailored orders.

Background: Contemporary societies are rife with moral disagreement, resulting in recalcitrant disputes on matters of public policy. In the context of ongoing bioethical controversies, are uncompromising attitudes rooted in beliefs about the nature of moral truth?

Methods: To answer this question, we conducted both exploratory and confirmatory studies, with both a convenience and a nationally representative sample (total N = 1501), investigating the link between people's beliefs about moral truth (their metaethics) and their beliefs about moral value (their normative ethics).

Results: Across various bioethical issues (e.g., medically-assisted death, vaccine hesitancy, surrogacy, mandatory organ conscription, or genetically modified crops), consequentialist attitudes were associated with weaker beliefs in an objective moral truth. This association was not explained by domain-general reflectivity, theism, personality, normative uncertainty, or subjective knowledge.

Conclusions: We find a robust link between the way people characterize prescriptive disagreements and their sensibility to consequences. In addition, both societal consensus and personal conviction contribute to objectivist beliefs, but these effects appear to be asymmetric, i.e., stronger for opposition than for approval.

Background: Ventilator allocation plan for a public health crisis should be developed through recognizing the values of society and engaging the general public. This study was conducted to assess the Iranian citizens' attitude about some principles and criteria for allocation of ventilators in the current COVID-19 epidemic.Materials and Methods: An electronic self-administered questionnaire was publicly distributed through social networks of Telegram and WhatsApp to perform this cross-sectional study. The questionnaire consisted of 11 statements about the selection and prioritization of patients for the use of a ventilator.Results: 1262 persons, including 767 citizens and 495 health care providers participated in this study. More than 95% of participants agreed upon the necessity to avoid discrimination and avoid prioritization according to patients' gender, economic and political status. While 40.9% of citizens and 49.6% of healthcare workers believed that a ventilator can be disconnected from a patient with a poor prognosis to help another patient who has a better prognosis (P-value = 0.13), 34.3% of people and 29.6% of healthcare workers believed that the earlier admitted patients have the right to receive the device even if the likeliness of his/her survival is less than the next patient (P-value = 0.009).Conclusions: Maximizing health benefits as a measure of ventilator allocation in the pandemic of COVID-19 is an accepted criterion. Meanwhile, periodic evaluation of patients and disconnecting the device from a patient that no longer benefits from ICU services requires its scientific and ethical basis to be brought in public discourse.

Background: The changing clinical research recruitment landscape involves practical challenges but introduces opportunities. Researchers can now identify large numbers of eligible patients through electronic health record review and can directly contact those who have authorized contact. Applying behavioral science-driven strategies to design and frame communication could affect patients' willingness to authorize contact and their understanding of these programs. The ethical and practical implications of various strategies warrant empirical evaluation.

Methods: We conducted an online survey (n = 1070) using a nationally-representative sample. Participants were asked to imagine being asked for authorization for research contact in clinic. They were randomly assigned to view one of three flyers: #1-neutral text flyer; #2-a positive text flyer; or #3-positive graphics-based flyer. Primary outcomes included likelihood of enrollment and comprehension of the program. Chi-Square tests and regression analyses were used to examine whether those who saw the positive flyers were more likely to enroll and had increased comprehension.

Results: Compared to the neutral flyer, individuals who received the positive text flyer were numerically more likely to enroll, but this was not statistically significant (24.2% v. 19.0%, p = 0.11). Individuals who received the positive graphics flyer were more likely to enroll (28.7% v. 19.0%, p = 0.002). After adjustment, individuals assigned to both novel flyers had increased odds of being likely to enroll (OR = 1.55 95%CI [1.04, 2.31] and OR = 1.95 95%CI [1.31, 2.91]). Flyer type did not affect overall comprehension (p = 0.21), and greater likelihood of enrollment was observed only in individuals with better comprehension.

Conclusions: This study demonstrated that employing behavioral science-driven communication strategies for authorization for research contact had an effect on likelihood of hypothetical enrollment but did not significantly affect comprehension. Strategies using simple, positive language and visual tools may be effective and ethically appropriate. Further studies should explore how these and other approaches can help to optimize research recruitment.

Background: The desire of parents to obtain a genetic diagnosis for their child with intellectual disability and associated symptoms has long been framed as a diagnostic odyssey, an arduous and sometimes perilous journey focused on the goal of identifying a cause for the child's condition.Methods: Semi-structured interviews (N = 60) were conducted with parents of children (N = 59, aged 2-24 years) with intellectual disability and/or developmental delay (IDD) who underwent genome sequencing at a single pediatric multispecialty clinic. Interviews were conducted after parents received their child's sequencing result (positive findings, negative findings, or variants of unknown significance). Thematic analysis was performed on all interviews.Results: Parents reported that obtaining a genetic diagnosis was one important step in their overall goal of helping their child live their best life possible life. They intended to use the result as a tool to help their child by seeking the correct school placement and obtaining benefits and therapeutic services.Conclusions: For the parents of children with IDD, the search for a genetic diagnosis is best conceptualized as a part of parents' ongoing efforts to leverage various diagnoses to obtain educational and therapeutic services for their children. Cleaving parents' search for a genetic diagnosis from these broader efforts obscures the value that some parents place on a sequencing result in finding and tailoring therapies and services beyond the clinic. Interviews with parents reveal, therefore, that genomic sequencing is best understood as one important stage of an ongoing therapeutic odyssey that largely takes place outside the clinic. Findings suggest the need to expand translational research efforts to contextualize a genetic diagnosis within parents' broader efforts to obtain educational and therapeutic services outside clinical contexts.

Background: This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received.

Methods: We adapted democratic deliberation, an approach to stakeholder engagement, for use with three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation.

Results: A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement.

Conclusion: The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described.

Using moral foundations theory (MFT), this study analyzes how Republican governors employed moral concepts to either build support or opposition to Medicaid expansion. The study examined statements about Medicaid expansion made by all Republican governors as reported in two large newspapers in each governor's state from 28 June 2012 to 31 December 2018. A slight majority of the statements (183 or 58.5%) used moral arguments in support of Medicaid expansion. Governors from both policy camps most frequently used the moral foundations shared by liberals and conservatives: care/harm and fairness/cheating. Those supporting expansion also used loyalty/betrayal, authority/subversion, and sanctity/degradation. Those opposing expansion used liberty/oppression. Policymakers recognize that activating the public's moral intuitions can be an effective way to advance a policy of interest. Those interested in advancing health policies would do well to better understand the kind of moral arguments that are used with potential supporters and arguments that may be used by opponents.

This paper explores a dilemma that confronts empirical researchers who are interested in taking the field of bioethics itself as an object of study. Drawing inspiration and data from a recent Institutional Review Board (IRB) process, I discuss my current research, which explores the phenomenon of pediatric biomedical refusal - situations in which young people and their families resist or refuse forms of biomedical treatment for a range of cultural, religious, and political reasons. Standards of informed consent, "best interests", and child protection are central problematics in my research. They are also non-negotiable principles for the ethical conduct of research with human subjects. This presents what I am calling a "dilemma of immanence," in which my research becomes structured and governed by the very same bioethics principles that I seek to interrogate. While many social scientists wrestle with IRB regulations, I argue that this specific dilemma may be particular to empirical bioethics research - particular because our research questions and objectives coincide with the IRB's own mandate.