A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

The expansion of research on deep brain stimulation and adaptive DBS raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data or would (...) share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data, and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research. (shrink)

Phase 1 healthy volunteer clinical trials—which financially compensate subjects in tests of drug toxicity levels and side effects—appear to place pressure on each joint of the moral framework justifying research. In this article, we review concerns about phase 1 trials as they have been framed in the bioethics literature, including undue inducement and coercion, unjust exploitation, and worries about compromised data validity. We then revisit these concerns in light of the lived experiences of serial participants who are income-dependent on phase (...) 1 trials. We show how participant experiences shift attention from discrete exchanges, behaviors, and events in the research enterprise to the ongoing and dynamic patterns of serial participation in which individual decision-making is embedded in collective social and economic conditions and shaped by institutional policies. We argue in particular for the ethical significance of structurally diminished voluntariness, routine powerlessness in setting the terms of exchange, and incentive structures that may promote pharmaceutical interests but encourage phase 1 healthy volunteers to skirt important rules. (shrink)

In Working Virtue: Virtue Ethics and Contemporary Moral Problems, leading figures in the fields of virtue ethics and ethics come together to present the first ...

This essay explores three issues in respect for autonomy that pose unfinished business for the concept. By this, I mean that the dialogue over them is ongoing and essentially unresolved. These are: whether we ought to respect persons or their autonomous choices; the role of relational autonomy; and whether nonhuman animals can be autonomous. In attending to this particular set of unfinished business, I highlight some critical moral work left aside by the concept of respect for autonomy as understood in (...) Beauchamp and Childress’ Principles of Biomedical Ethics. Specifically, while significant pragmatic traction is gained by the authors’ focus on autonomous choice, carving such a focus out from the broader questions of moral respect and the autonomy of the person leaves aside a number of questions that we might have thought a view about respect for autonomy in biomedicine ought to answer. These include: How should physicians respond when autonomous patients make decisions that appear nonautonomous? What is the impact of the view that autonomy is “relational” for cross-cultural differences in how autonomy is respected? If chimpanzees can be autonomous, what does that mean for how they should be treated? (shrink)

Human beings with diminished decision-making capacities are usually thought to require greater protections from the potential harms of research than fully autonomous persons. Animal subjects of research receive lesser protections than any human beings regardless of decision-making capacity. Paradoxically, however, it is precisely animals’ lack of some characteristic human capacities that is commonly invoked to justify using them for human purposes. In other words, for humans lesser capacities correspond to greater protections but for animals the opposite is true. Without explicit (...) justification, it is not clear why or whether this should be the case. Ethics regulations guiding human subject research include principles such as respect for persons—and related duties—that are required as a matter of justice while regulations guiding animal subject research attend only to highly circumscribed considerations of welfare. Further, the regulations guiding research on animals discount any consideration of animal welfare relative to comparable human welfare. This paper explores two of the most promising justifications for these differences␣between the two sets of regulations. The first potential justification points to lesser moral status for animals on the basis of their lesser capacities. The second potential justification relies on a claim about the permissibility of moral partiality as␣found in common morality. While neither potential justification is sufficient to justify the regulatory difference as it stands, there is possible common ground between supporters of some regulatory difference and those rejecting the current difference. (shrink)

Bayesian probability has recently been proposed as a normative theory of argumentation. In this article, we provide a Bayesian formalisation of the ad Hitlerum argument, as a special case of the ad hominem argument. Across three experiments, we demonstrate that people's evaluation of the argument is sensitive to probabilistic factors deemed relevant on a Bayesian formalisation. Moreover, we provide the first parameter-free quantitative evidence in favour of the Bayesian approach to argumentation. Quantitative Bayesian prescriptions were derived from participants' stated subjective (...) probabilities (Experiments 1 and 2), as well as from frequency information explicitly provided in the experiment (Experiment 3). Participants' stated evaluations of the convincingness of the argument were well matched to these prescriptions. (shrink)

Adoption of technology in agriculture can significantly reorganize production and relationships amongst humans, animals, technology, and the natural environment. However, the adoption of agricultural technology is not homogenous, and diversity in integration leads to a diversity of outcomes and impacts. In this study, we examine the adoption of automated milking systems in small and midsize dairy farms in the US Midwest, the Netherlands, and Denmark. In contrast to technological determinism, we find significant variation amongst adopters in the implementation of AMS (...) and corresponding variation in outcomes. Adopters have significant discretion in determining the use of AMS, which leads to a diversity of possible outcomes for family and non-family labor, human–cow relationships, animal welfare, the environment, and financial resiliency. Adoption and implementation are shaped by both structural factors, such as debt load and labor market variation, and by farmers’ individual personality traits and values, such as a willingness to release control to technology. Rather than uniform adoption and impacts of technology, we highlight the importance of context, the co-constitution of technology and users, and the diversity of technology adoption and its associated impacts. (shrink)

Should monkeys be used in painful and often deadly infectious disease research that may save many human lives? This is the challenging question that Anne Barnhill, Steven Joffe, and Franklin G. Miller take on in their carefully argued and compelling article “The Ethics of Infection Challenges in Primates.” The authors offer a nuanced and even-handed position that takes philosophical worries about nonhuman primate moral status seriously and still appreciates the very real value of such research for human welfare. Overall, they (...) argue for an extension and revision of the recommendations regarding chimpanzee research offered by the Institute of Medicine in 2011; the practical upshot of their argument would allow for infection challenge research for promising interventions for Ebola and Marburg virus diseases but not for smallpox or the common cold. The IOM recommendations regarding chimpanzee research put in motion an exceptionalist policy for this great ape population. Barnhill and colleagues’ proposal would enlarge the scope of that exceptionalism to embrace NHPs other than great apes. But is such exceptionalism warranted? It is not obvious to me either that the more sophisticated capacities of a species as a whole give it greater ethical protections or that less intellectually or socially sophisticated animals ought to therefore receive less protection when it comes to painful experimental interventions. (shrink)

From the late 1950s through the early 1970s, Harry F. Harlow's primate laboratory at the University of Wisconsin–Madison undertook a series of studies on infant rhesus macaque monkeys that gained the attention of both animal welfare advocates and the scientific community.1 Establishing one of the first primate research laboratories in 1932, Harlow began his career as a primate researcher by studying primate learning capabilities and shredding previous assumptions within psychology that primates were restricted to the conditioned learning of a rat. (...) As his need for subjects in particular age ranges and easily susceptible to study grew in the 1950s, he again broke research ground by establishing a captive breeding... (shrink)

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample (...) of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries. (shrink)

Research uses of human bodies maintained by mechanical ventilation after being declared dead by neurological criteria, were first published in the early 1980s with a renewed interest in research on the newly or nearly dead occurring in about last decade. While this type of research may take many different forms, recent technologic advances in genomic sequencing along with high hopes for genomic medicine, have inspired interest in genomic research with the newly dead. For example, the Genotype-Tissue Expression program through the (...) National Institutes of Health aims to collect large numbers of diverse human tissues with the eventual goal of elucidating the genetic bases of common diseases through a better understanding of the relationship between genetic variation and gene expression. (shrink)

Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate (...) the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor. (shrink)

Biodefense and emerging infectious disease animal research aims to avoid or ameliorate human disease, suffering, and death arising, or potentially arising, from natural outbreaks or intentional deployment of some of the world’s most dreaded pathogens. Top priority research goals include finding vaccines to prevent, diagnostic tools to detect, and medicines for smallpox, plague, ebola, anthrax, tularemia, and viral hemorrhagic fevers, among many other pathogens (National Institute of Allergy and Infectious Diseases [NIAID] priority pathogens). To this end, increased funding for conducting (...) research, developing research facilities, and purchasing (stockpiling) developed vaccines, diagnostic tools, and therapeutics .. (shrink)

Opioid litigation continues a growing public health litigation trend in which governments seek to hold companies responsible for population harms related to their products. The litigation can serve to address gaps in regulatory and legislative policymaking and in market self-regulation pervasive in the prescription opioid domain. Moreover, prior opioid settlements have satisfied civil tort litigation objectives of obtaining compensation for injured parties, deterring harmful behavior, and holding certain opioid manufacturers, distributors and pharmacies accountable for their actions. In this way, opioid (...) litigation represents progress over prior public health litigation campaigns involving tobacco, lead paint, and asbestos, which had more limited tort litigation effects. Although opioid litigation is not a comprehensive solution to the opioid crisis, it can complement other strategies and infuse much needed money, behavior changes, and public accountability for prescription opioid and related harms. (shrink)

Drawing on social comparison theory, we investigate employees’ ethical and performance comparisons relative to a similar coworker and subsequent emotional and behavioral responses. We test our theoretically driven hypotheses across two studies. Study 1, a cross-sectional field study, reveals that employees who perceive they are more ethical than their coworkers experience negative emotions toward the comparison coworkers and those feelings are even stronger when the employees perceive they are lower performers than their coworkers. Results also reveal that negative emotions mediate (...) the indirect relationship between being more ethical than a coworker, but also being a lower performer than that coworker onto social undermining and ostracism. Study 2, a 2 × 2 between-subjects experimental design, provides further support for our moderated mediation model. Results reveal that participants experience negative emotions when they receive information that they are more ethical than a comparison participant. Negative emotions are amplified if the participant is told they were a lower performer than the comparison participant. Those participants indicate their desire to mistreat and ignore the comparison participant if given the opportunity. Thus, we find support for our hypotheses using a multi-method design. (shrink)

In their Target Article, “Promoting Ethical Payment in Human Infection Challenge Studies,” Lynch et al. propose a framework for ethical payment to research participants and apply it to the c...

: Offering an introduction to both John Dewey's philosophy of education and the 4-H Youth Development Program, this paper draws clear connections between these two topics. Concepts explored include Dewey's principles of continuity and interaction, and contagion with respect to learning. Roles of educational leaders (including teachers) are investigated in the context of a discussion about the structuring of opportunities for students to develop habits of meaningful and life-long learning. Specific examples are described in depth to demonstrate, from a Deweyan (...) perspective, the educational process and value of 4-H participation. Brief comments are made about the place of 4-H in the U.S. system of public education. (shrink)

The popular press is often fraught with high-profile illustrations of leader unethical conduct within corporations. Leader unethical conduct is undesirable for many reasons, but in terms of managing subordinates, it is particularly problematic because leaders directly influence the ethics of their followers. Yet, we know relatively little about why leaders fail to apply ethical leadership practices. We argue that some leaders cognitively remove the personal sanctions associated with misconduct, which provides them with the “freedom” to ignore ethical shortcomings. Drawing on (...) moral disengagement theory, we examine the relationship between supervisor moral disengagement and employee perceptions of ethical leadership. We then examine the moderating role of employee moral disengagement, such that the negative relationship between supervisor moral disengagement and employee perceptions of ethical leadership is stronger when employee moral disengagement is low versus high. Finally, we examine ethical leadership as a conditional mediator that explains that relationship between supervisor moral disengagement and employee job performance and organizational citizenship behavior. Results from a multi-source field survey provide general support for our theoretical model. (shrink)

This paper examines structural barriers to the adoption of climate change mitigation practices and the evolution of a climate change ethic among American farmers. It examines how seed corn contracts in Michigan constrain the choices of farmers and allow farmers to rationalize the over-application of fertilizer and associated water pollution and greenhouse gas emissions. Seed corn contracts use a competitive “tournament” system where farmers are rewarded for maximizing yields. Interviews and a focus group were used to understand fertilizer over-application and (...) barriers to participating in a climate change mitigation program. Results indicate that farmers agree that they over-apply fertilizer but would be unlikely to participate in a mitigation program due to their contracts and lack of support from seed corn companies. Because only a few companies control access to the seed corn market, farmers feel they have few choices. Farmers rationalized their practices as their only option given the competitive nature of their contracts and blamed other sources of pollution. Despite increasing efforts to educate farmers about climate change, structural barriers will continue to constrain participation in mitigation efforts and the development of a climate change ethic. (shrink)

Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...) right to an open future—frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs. (shrink)

Alternative food networks are exemplified by organic, fair trade and local foods, and promote forms of food provisioning that are ‘corrective’ to conventional agriculture and food systems. Despite enthusiasm for AFNs, scholars have increasingly interrogated whether inequalities are perpetuated by AFNs. Reproduction of gender inequality in AFNs, particularly at the level of consumption, has often been left empirically unexamined, however. This is problematic given that women continue to be predominantly responsible for food provisioning in the US, and that this responsibility (...) can lead to negative physical, psychological and social outcomes. Using quantitative methods and data from the 2012 Ohio Survey of Food, Agriculture, and Environmental Issues, this paper examines the extent to which gender inequality in the division of labor is reproduced in AFNs by focusing on the potential persistence of gender inequality in food provisioning among AFN participants. Findings suggest that among AFN participants, particularly those utilizing local food systems, women, compared to men, remain predominantly responsible for food provisioning, spend more time in food provisioning, and engage in more food provisioning from scratch. This research confirms that food provisioning remains a gendered act amongst AFN participants, calling attention to the persistence of gender inequality in AFNs. The paper concludes by suggesting that AFNs are positioned as a place to create change, albeit small scale, in the gendered division of household labor in the US, and provides some practical suggestions for how this might occur. (shrink)

Drawing on theoretical arguments from the psychology discipline, we investigate the implications of employee entitlement in organizational settings. Specifically, we utilize workplace engagement theory to suggest that due to their skewed sense of deservingness, employees high in entitlement are less likely to experience workplace engagement. Furthermore, the negative relationship between employee entitlement and workplace engagement is strengthened when ethical leadership is low, yet mitigated when ethical leadership is high. Finally, we predict that under conditions of low ethical leadership, reductions in (...) engagement explain why employee entitlement results in hindered job performance. This mediated effect does not hold when ethical leadership is high. We tested our theoretical model utilizing field data from employees and their direct supervisors in the financial services industry. Our results support our theoretical model. Theoretical and practical implications are discussed. (shrink)

The English Surgeon . 2008. Produced and directed by Geoffrey Smith. Eyeline Films and Bungalow Town Productions. English and Ukrainian, with English subtitles. 1 hour 33 minutes. http://www.theenglishsurgeon.com Content Type Journal Article DOI 10.1007/s11673-010-9225-7 Authors Rebecca L. Volpe, California Pacific Medical Center Clinical Ethics Fellow, Program in Medicine & Human Values 2395 Sacramento Street, 3rd floor San Francisco CA 94115 USA Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529 Journal Volume Volume 7 Journal Issue Volume 7, (...) Number 2. (shrink)

Drawing on theory and research on ethical leadership and ethical climate, we examine ethical climate as a mediator of the relationship between ethical leadership and employee misconduct. Using a sample of 1,525 employees and their supervisors in 300 units in different organizations, we find support for our hypothesized model. We discuss theoretical and practical implications of these findings.