AJOB Empirical Bioethics最新文献

Background: Nonhuman animals are regularly enhanced genomically with CRISPR and other gene editing tools as scientists aim at better models for biomedical research, more tractable agricultural animals, or animals that are otherwise well suited to a defined purpose. This study investigated how genome editors and policymakers perceived ethical or policy benefits and drawbacks for animal enhancement and how perceived benefits and drawbacks are alike, or differ from, those for human genome editing.

Methods: We identified scientists through relevant literature searches as well as conference presentations. Policymakers were identified through rosters of genome editing oversight groups (e.g., International Commission on the Clinical Use of Human Germline Genome Editing, World Health Organization) or efforts aimed at influencing policy (e.g., deliberative democracy groups). Interviews covered participants' views on ethical differences between interventions affecting somatic or germline cells and distinctions between using gene editing for disease treatment, prevention, and enhancement purposes.

Results: Of the 92 participants interviewed, 81 were genome editing scientists, and 33 were policymakers, with 22 interviewees being both scientists and policymakers. Multiple areas were identified in which the ethical implications of genomic enhancements for nonhuman animals differ from those for human animals including with respect to experiential welfare; germline edits; environmental sustainability; and justice.

Conclusions: Overall, respondents viewed that animal enhancement is unburdened by the ethical complexities of human enhancement. These views may be related to participant perceptions of animals' lesser moral status and because germline editing in animals is common practice.

Background: Some have hypothesized that changing attitudes toward medical aid in dying (MAID) contribute to increased suicide rates, perhaps by increasing interest in dying or the perceived acceptability of suicide. This would represent a strong criticism of MAID policies. We sought to evaluate the association between the legalization and implementation of MAID across the U.S. and changing suicide rates.

Methods: We evaluated state-level monthly suicide death rates from 1995 to 2021. Because suicide rates vary by state, we constructed geographically-weighted regression models controlling for annualized state-level sociodemographic factors, such as racial distribution (percent Caucasian), average age, income levels, unemployment rates, rates of spiritual engagement, firearm ownership rates, gender ratios, and education levels. We applied a difference-in-difference analysis within our geographically-weighted models.

Results: 927,929 Suicide deaths were represented in the study. Ten states and the District of Columbia had legalized MAID within the study period. In an univariable analysis, states that legalized MAID differed significantly from non-MAID states with respect to mean monthly suicide rate (non-MAID States: 1.46; MAID states: 1.78; p < 0.0001), as well as several covariates. Monthly suicide death rates were spatially autocorrelated (Moran's I = 0.607, p < 0.0001). In separate geographically-weighted difference-in-difference analyses, changes in suicide rates were not significantly associated with MAID legalization (β = 0.042, p = 0.33) or with later MAID implementation (β = 0.030, p = 0.63), with differences in suicide rates in MAID and non-MAID states being attributable to baseline between-state differences.

Conclusions: Our study failed to find evidence that suicide rates were positively associated with MAID legalization or MAID implementation, when controlling for geographic variation and multiple sociodemographic factors associated with suicide risk. This finding contrasts with other studies that have reported a positive association between suicide rates and MAID, and so calls into question one argument against MAID legalization.

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: 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.

Background: Advance healthcare decision-making presumes that a prior treatment preference expressed with sufficient mental capacity ("T1 preference") should trump a contrary preference expressed after significant cognitive decline ("T2 preference"). This assumption is much debated in normative bioethics, but little is known about lay judgments in this domain. This study investigated participants' judgments about which preference should be followed, and whether these judgments differed depending on a first-person (deciding for one's future self) versus third-person (deciding for a friend or stranger) perspective.

Methods: A vignette-based survey was conducted (N = 1445 US Americans; gender-balanced sample), in a 3 (relationship: self, best friend, stranger) × 2 (T1 preference: treat, do not treat) × 2 (T2 contrary preference: ambiguous, unambiguous) design.

Results: Participants were more likely to defer to the incapacitated T2 preference of a third-party, while being more likely to insist on following their own T1 capacitated preference. Further, participants were more likely to conclude that others with substantial cognitive decline were still their "true selves," which correlated with increased deference to their T2 preferences.

Conclusions: These findings add to the growing evidence that lay intuitions concerning the ethical entitlement to have decisions respected are not only a function of cognition, as would be expected under many traditional bioethical accounts, but also depend on the relationship of the decision to the decision-maker's true self.

Background: In the early 2010s, a phenomenon known as do-it-yourself (DIY) fecal microbiota transplant (FMT) emerged as lay individuals began self-administering FMTs at home. Although prior research indicates that many individuals who perform DIY FMT have sought advice from healthcare providers, to date there has been no investigation of physicians' experiences with DIY FMT. The objective of this qualitative study was to examine the attitudes of physicians who offer FMT regarding the practice of DIY FMT and to assess how they navigated the ethical challenges of patient requests for DIY FMT.

Methods: We recruited physicians listed on two patient-created online databases of FMT providers. All physicians who indicated having been approached for advice about DIY FMT were included in the study. Semi-structured interviews with physicians explored their attitudes toward and experiences with DIY FMT.

Results: Of 18 physicians interviewed, one reported having provided counsel in response to an initial patient inquiry about DIY FMT, 2 indicated they explicitly advised against DIY FMT and refused to provide advice, and 15 fell in a middle category of discouraging DIY FMT and discussing reasons why. Among the physicians in this third category, four reported that they had changed their approach to providing counsel in response to a patient telling them they were going to perform DIY FMT anyway.

Conclusions: Physicians in our study employed a wide range of strategies for promoting safety in the DIY FMT context, from explicitly advising against the procedure to the provision of guidance aimed at mitigating potential harms. While there has been increasing attention to the practices of DIY medicine, this study underscores the need for greater attention to the ethically complex situations that physicians face when patients request guidance for unapproved at-home treatments.

Background: This study assesses how pediatric assent is conceptualized and justified within the therapeutic context. Pediatric ethicists generally agree that children should participate in medical care decisions in developmentally appropriate ways. Much attention has been paid to pediatric assent for research participation, but ambiguities persist in how assent is conceptualized and operationalized in the therapeutic context where countervailing considerations such as the child's best interest and parental permission must also be weighed.

Methods: Searches were conducted in 11 databases including PubMed, Embase, Cochrane Library, and Web of Science. Articles published between 2010 and 2020 were screened in COVIDENCE for meeting each of four criteria: (1) focusing on pediatric assent, (2) focusing on clinical care, (3) including normative claims, and (4) containing substantive statements about the meaning of pediatric assent. Full texts were abstracted for (1) operational definitions of assent, (2) discussion of the temporal nature of assent, (3) description of the concept of "understanding," and (4) ethical justifications for soliciting assent. These excerpts were coded and code patterns formed themes presented in the results.

Results: The final analytic data set contained 29 articles. Analysis yielded three key themes. First, valid assent varies by treatment, population (e.g., younger versus older), and geographic/cultural context. Second, assent represents two distinct longitudinal processes: One involves eliciting preferences over a disease course or care episode; the other focuses on children's developmental maturation. Third, ethical justifications for assent draw variously on instrumental and intrinsic reasons, but often remain ambiguous.

Conclusions: There is widespread agreement that assent is morally valuable, but there remain substantial ambiguities or disagreements about its meaning, process, and ethical justification.

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.