AJOB Empirical Bioethics最新文献

Background: The American Society for Bioethics and Humanities (ASBH), a professional organization that certifies ethics consultants who pass the qualifying examination, published standards for the conduct of ethics consultations (EC). A national survey of adult hospital ethics consultants identified adherence to these standards, but no assessment of pediatric hospitals' adherence has been done.

Methods: In this cross-sectional study, a national questionnaire was distributed electronically in 2022 to pediatric ethics consultants at children's hospitals, collecting information about adherence to the ASBH standards. Hospital characteristics were extracted from the Children's Hospital Association Annual Benchmark Report. Quantitative analysis included descriptive statistics to assess adherence and analyses of variance to investigate associations between hospital characteristics and the time taken to respond to consultations.

Results: Of the 181 eligible pediatric hospitals, we received 104 completed surveys (57%) from 45 states. Pediatric EC have similar adherence rates to ASBH standards as adult hospitals. High-adherence (>75%) areas included having an expert available for EC and permitting any staff member to request EC. Low-adherence areas included having comprehensive policies covering all aspects of EC activities, having a response plan for egregious violations, and the elicitation of formal feedback after EC. There is an increased average response time for ethics consultation services in smaller pediatric hospitals and church-operated hospitals.

Conclusions: Pediatric hospitals overall have moderate adherence to the ASBH EC standards, with the highest rates occurring for standards that are shared by the American Academy of Pediatrics. Additional research into the barriers to standard adherence and the effectiveness of standards is warranted with emphasis on the impact of adherence on consultation quality.

Background: States and families are facing growing challenges provide adequate care for older persons. Smart home health technologies (SHHTs) in the forms of sensor or robotic devices have been discussed as technical solutions for caregiving. Ethical and social concerns are raised with the use of such technologies for caregiving purposes, a particularly prominent one being privacy. This paper contributes to the literature by distinguishing privacy concerns into both the type of technologies and conceptual dimensions.

Methods: Data for this paper stem from sixty semi-structured interviews with older persons, informal, and formal caregivers living in the German-speaking regions of Switzerland. All information related to privacy, that were initially inductively coded, were thematically sorted into four dimensions of privacy (physical, psychological, social, and informational) and by the type of technologies studied.

Results: Participants were especially concerned about privacy intrusions from smart wearables and ambient sensors than robotic technologies, which may be due to the relative lack of familiarity with the latter. Informational privacy was evident in the context of data collection capacities and potential for misuses of data. The installation and implementation of both visual and ambient sensors induced discomfort to their senses of physical space. Alerts of smart wearables and obtrusive sightings of SHHTs garnered worries related to stigmatization and manipulation, indicating intrusions into end-users' psychological privacy. Little discussions of social dimensions of privacy were evident in the data, even toward robotic technologies for their functions to promote social interactions for older persons.

Conclusions: This paper is one of the first that use the stratification approach on empirical data to highlight the multi-faceted privacy concerns when technologies may be implemented in elder care. Our paper could thus supports potential end-users in deciding which technologies to use and how to balance different privacy concerns against other values that they may hold important.

Background: Financial compensation may be perceived as a catalyst to increase the recruitment and retention of healthy volunteers in clinical trials but also potentially as a form of undue inducement. The ethical guidelines in Tanzania, while helpful, are not clear on what is considered reasonable compensation for healthy volunteers and the extent to which it influences participation. This study aimed to explore research personnels' perceptions of the ethical aspects of financial compensation to healthy volunteers participating in prevention trials in Tanzania.

Methods: Qualitative semi-structured interviews were conducted in Tanzania with a purposive sample of 36 research personnel with different project roles ranging from principal investigators (PIs) to study staff on six prevention trials. The interviews were recorded and transcribed verbatim and thematic analysis was performed.

Results: Most research personnel were physicians (64%) and male (67%) with a mean age of 48 years. Three qualitative themes were identified: ethical justifications for financial compensation, ethical concerns about financial compensation and fair compensation as income. Most Tanzanian research personnel were more aligned with the view that financial compensation is an ethical responsibility in respecting the value of a healthy volunteer's time and effort, especially for those who face barriers to participation, rather than being a bribe. However, there were those who raised ethical concerns about financial compensation that included perceptions of bribing low-income earners and increased misperceptions of trial activities. Research personnel also indicated that the specific amount of financial compensation has ethical implications. Amounts that were either too much or too little were viewed as unethical, whereas a modest rate was perceived as ethical.

Conclusions: Paying healthy volunteers is a measure of respect and supported by the national Tanzanian research guidelines. However, a reevaluation of these research ethical guidelines to redefine reasonable, fair and just financial compensation, especially for those who face significant barriers to participation, would continue to respect healthy volunteers and provide regional guidance for researchers within the country.

To succeed, an accreditation process for clinical ethics fellowship programs (CEFPs) would need support from CEFP directors. To assess CEFP directors' opinions, we surveyed all 36 CEFP directors in the United States and Canada, achieving a 100% response rate. We found that support for accreditation is strong, with 30.6% strongly supportive, 44.4% supportive, 22.2% neutral, 2.8% opposed, and 0% strongly opposed. Most directors (77.8%) would be likely to apply for accreditation within the next five years regardless of the availability of government funding; even more (86.1%) would apply if government funding became available for accredited programs. Most directors thought that lack of a national accreditation process (75.0%), lack of agreed-upon standards (90.0%), and lack of funding for CEFPs (91.7%) were at least moderate problems for the field. When directors were asked what they thought was the greatest challenge or barrier to developing an accreditation process, many mentioned the diversity of programs and the challenge of achieving consensus on accreditation standards. Directors offered a variety of suggestions for how to overcome or manage challenges or barriers, including collecting data on existing programs, mirroring standards established for other health professions, and setting clear expectations on the need for compromise. When directors were asked how they expected that accreditation and government funding would affect their own programs, the field of clinical ethics, and patient care, directors mostly had very positive expectations; no director expected negative effects in any of these areas. Overall, this study provides evidence that developing an accreditation process for CEFPs would be both possible and desirable. Our findings have immediate practical implications for the field and will inform efforts that are already underway to establish an accreditation process for CEFPs.

Background: Implementation science presents ethical issues not well addressed by traditional research ethics frameworks. There is little empirical work examining how clinicians whose work is affected by implementation studies view these issues. Accordingly, we interviewed clinicians working at sites participating in an implementation study seeking to improve patient handoffs to the intensive care unit (ICU).

Methods: We performed semi-structured interviews with 32 clinicians working at sites participating in an implementation study aiming to improve patient handoffs from the operating room to the ICU. We analyzed the interviews using an iterative coding process following a conventional content analysis approach.

Results: Clinicians' greatest concern about involvement was possible damage to interpersonal relations with more senior clinicians. They were divided about whether informed consent from clinicians was necessary but were satisfied with the study's approach of sending out mass communications about the study. They did not think opting out of the implementation portion of the study was feasible but saw this inability to opt out as unproblematic because they equated the study with routine quality improvement. Those clinicians who helped launch the study at their sites recounted several different ways of doing so beyond simply facilitating access.

Conclusions: The risks that clinicians identified stemmed more from their general status as employees than their specific work as clinicians. Implementation researchers should be attuned to the ethical ramifications of involving employees of varying ranks. Implementation researchers using hybrid designs should also be sensitive to the possibility that practitioners affected by a study will equate it with quality improvement and overlook its research component. Finally, the interactions that go into facilitating an implementation study are more various than the "gatekeeping" typically discussed by research ethicists. More research is needed on the ethics of the myriad interactions that are involved in making implementation studies happen.

Background: The literature on the ethics of biobanking often overlooks the practical operations of biobanks. The ethics of stewardship requires that biobank resources are used to conduct beneficial science. Networked biobanks have emerged to increase the scientific benefit of biobank resources, but little is known about whether and how operations of networking may accomplish this goal.

Methods: As part of a larger study on the ethical, legal, and social implications (ELSI) of networked biobanking, we conducted 38 interviews with representatives of 31 networked biobanks. Interviews explored operations of the networks. We used thematic analysis to examine how respondents describe three topics associated with stewarding biobank resources-funding, utilization, and sustainability.

Results: Our results highlight that funding, utilization, and sustainability are critical not only to the operation of biobanks, but also to the ethical obligations that biobankers owe to stakeholders to steward the resources. Based on prior research, we hypothesized that respondents would describe networking as beneficial to increasing funding, utilization, and sustainability of the network. Respondents generally found value in networked biobanking, but networking did not necessarily increase funding, utilization, and sustainability.

Conclusion: The results presented here support inclusion of funding, utilization, and sustainability as topics of ethical concern in the practice of biobanking and networked biobanking. These issues are rooted in the stewardship obligations that biobankers feel to their partners, client investigators, and participants. The goal of promoting stewardship through networking requires significant time and effort to build governance models that honor the obligations of each individual biobank to their donors and advance the collective goals of the network. We conclude with suggestions offered by respondents to address improving these aspects of stewardship.

Introduction: Deep brain stimulation (DBS) is approved under a humanitarian device exemption to manage treatment-resistant obsessive-compulsive disorder (TR-OCD) in adults. It is possible that DBS may be trialed or used clinically off-label in children and adolescents with TR-OCD in the future. DBS is already used to manage treatment-resistant childhood dystonia. Evidence suggests it is a safe and effective intervention for certain types of dystonia. Important questions remain unanswered about the use of DBS in children and adolescents with TR-OCD, including whether mental health clinicians would refer pediatric patients for DBS, and who would be a good candidate for DBS.

Objectives: To explore mental health clinicians' views on what clinical and psychosocial factors they would consider when determining which children with OCD would be good DBS candidates.

Materials and methods: In depth, semi-structured interviews were conducted with n = 25 mental health clinicians who treat pediatric patients with OCD. The interviews were transcribed, coded, and analyzed using thematic content analysis. Three questions focused on key, clinical, and psychosocial factors for assessing candidacy were analyzed to explore respondent views on candidacy factors. Our analysis details nine overarching themes expressed by clinicians, namely the patient's previous OCD treatment, OCD severity, motivation to commit to treatment, presence of comorbid conditions, family environment, education on DBS, quality of life, accessibility to treatment, and patient age and maturity.

Conclusions: Clinicians generally saw considering DBS treatment in youth as a last resort and only for very specific cases. DBS referral was predominantly viewed as acceptable for children with severe TR-OCD who have undertaken intensive, appropriate treatment without success, whose OCD has significantly reduced their quality of life, and who exhibit strong motivation to continue treatment given the right environment. Appropriate safeguards, eligibility criteria, and procedures should be discussed and identified before DBS for childhood TR-OCD becomes practice.

Background: Some have hypothesized that talk about suffering can be used by clinicians to motivate difficult decisions, especially to argue for reducing treatment at the end of life. We examined how talk about suffering is related to decision-making for critically ill patients, by evaluating transcripts of conversations between clinicians and patients' families.

Methods: We conducted a secondary qualitative content analysis of audio-recorded family meetings from a multicenter trial conducted in the adult intensive care units of five hospitals from 2012-2017 to look at how the term "suffering" and its variants were used. A coding guide was developed by consensus-oriented discussion by four members of the research team. Two coders independently evaluated each transcript. We followed an inductive approach to data analysis in reviewing transcripts; findings were iteratively discussed among study authors until consensus on key themes was reached.

Results: Of 146 available transcripts, 34 (23%) contained the word "suffer" or "suffering" at least once, with 58 distinct uses. Clinicians contributed 62% of first uses. Among uses describing the suffering of persons, 57% (n = 24) were related to a decision, but only 42% (n = 10) of decision-relevant uses accompanied a proposal to limit treatment, and only half of treatment-limiting uses (n = 5) were initiated by clinicians. The target terms had a variety of implicit meanings, including poor prognosis, reduced functioning, pain, discomfort, low quality of life, and emotional distress. Suffering was frequently attributed to persons who were unconscious.

Conclusions: Our results did not support the claim that the term "suffering" and its variants are used primarily by clinicians to justify limiting treatment, and the terms were not commonly used in our sample when decisions were requested. Still, when these terms were used, they were often used in a decision-relevant fashion.

Background: Potential clinical interventions to mitigate or eliminate symptoms of Down syndrome (DS) continue to be an active area of pre-clinical and clinical research. However, views of members of the DS community have yet to be fully explored.

Methods: We conducted a survey with parents/caregivers of people with DS (n = 532) to explore interest in potential therapeutic approaches during fetal development or childhood that may improve neurocognition and modulate the DS phenotype. We qualitatively analyzed open-ended responses.

Results: Some respondents rejected the development of therapies for DS categorically as being fundamentally ableist and promoting the erasure of diverse individuals. Many reflected tensions between the desire to improve quality of life and an aversion to erasure of a child's personality.

Conclusion: Findings suggest that views on identity, personality, and disability may influence the acceptance of new interventions, especially if they are thought to mitigate positive attributes of the phenotype or negatively influence social acceptance of people with DS.

Background: Genome scientists and Ethical, Legal, and Social Implications of genetics (ELSI) scholars commonly inhabit distinct research cultures - utilizing different research methods, asking different research questions, and valuing different types of knowledge. Collaborations between these two communities are frequently called for to enhance the ethical conduct of genomics research. Yet, little has been done to qualitatively compare genome scientists' and ELSI scholars' perspectives on collaborations with each other and the factors that may affect these collaborations.

Methods: 20 semi-structured interviews with US-based genome scientists and ELSI scholars were conducted between June-September 2021. Interviews were analyzed using inductive thematic analysis.

Results: Genome scientists and ELSI scholars provided different understandings of the value and goals of their collaborations with each other. Genome scientists largely perceived ELSI expertise to be relevant for human subjects research; they described ELSI scholars as communicators who help the public and/or study participants better understand genomics research. In comparison, ELSI scholars viewed themselves as developing and implementing policies; they expressed frustration at how scientists can misunderstand their research methods or negatively perceive them. A combination of factors - both structural (e.g., criteria for promotion) and cultural (e.g., perceptions of what colleagues value and respect) - seemed to shape these diverging perspectives.

Conclusion: Academic institutions, funders, and researchers commonly call for collaborations between genome scientists and ELSI scholars, but under-consider how their different conceptual frameworks, research methods, goals, norms, and values, conjoin to affect such partnerships. Acknowledging, exploring, and addressing the complex interplay between these factors could help to more effectively facilitate collaborations between genome scientists and ELSI scholars.