This interview with media anthropologist, Rebecca L. Stein, conducted by Noa Levin and Andrew Fisher in Spring 2023, takes her recent book Screenshots: State Violence on Camera in Israel and Palestine (2021) as its starting point in order to explore issues of state violence and the militarization of social media in Israel/Palestine. This book marks the culmination of a decade-long research project into the camera dreams introduced by digital imaging technologies and the fraught histories of their disillusionment. Stein discusses (...) the way her research has critically conceptualized the recent history of hopes invested in the digital image in this geopolitical context, by the occupier as much as the occupied, and charts the failures and mistakes, obstructions and appropriations that characterize the conflicted visual cultures of Israel/Palestine. (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 ...

Ongoing evaluation of a clinical ethics consultation service (ECS) allows for continuous quality improvement, a process-based, data-driven approach for improving the quality of a service. Evaluations by stakeholders involved in a consultation can provide realtime feedback about what is working well and what might need to be improved. Although numerous authors have previously presented data from research studies on the effectiveness of clinical ethics consultation, few ECSs routinely send evaluations as an ongoing component of their everyday clinical activities. The primary (...) purpose of this article is to equip and encourage others to engage in ongoing evaluation of their own ECS. Toward that end, the following resources are shared: (1) the survey tool used to gather the evaluation data, (2) the procedure used to elicit and collate responses, and (3) how the resulting data are used to support continuous quality improvement and justify the continued financial support of the ECS to hospital administration. (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)

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)

Informed consent is the practical application of the principle of autonomy, and two of the five core features of informed consent are related to information. Researchers have reported on patients’ expressed needs for information, such as their stated desires for the quantity of and the source of information. A separate body of research has examined patients’ unexpressed needs for information from the perspective of cognitive psychology, such as the emotional tone and order of information. This article suggests that the autonomy (...) of patients is best served by meeting their expressed and unexpressed information needs in tandem. (shrink)

Research-oriented universities are known for prolific research activity that is often supported by students in faculty-guided research. To maintain ethical standards, universities require on-going training of both faculty and students to ensure Responsible Conduct of Research (RCR). However, previous research has indicated RCR-based training is insufficient to address the ethical dilemmas that are prevalent within academic settings: navigating issues of authorship, modeling relationships between faculty and students, minimization of risk, and adequate informed consent. U.S. universities must explore ways to identify (...) and improve RCR concerns for current (faculty) and future researchers (students). This article reports the findings of a self-study (_N_ = 50) of research stakeholders (students and faculty) at a top tier research institution. First, we report on their perceived importance of applying RCR principles. Second, we explore relationships between stakeholder backgrounds (e.g., prior training, field, and position) and how they ranked the degree of ethical concerns in fictitious vignettes that presented different unethical issues university students could encounter when conducting research. Vignette rankings suggested concerns of inappropriate relationships, predatory authorship and IRB violations which were judged as most unethical, which was dissimilar to what sampled researchers reported in practice as the most important RCR elements to understand and adhere to for successful research. Regression models indicated there was no significant relationship between individuals’ vignette ethics scores and backgrounds, affirming previous literature suggesting that training can be ineffectual in shifting researcher judgments of ethical dilemmas. Recommendations for training are discussed. (shrink)

Mr. C is a twenty‐two‐year‐old who was flown to a level‐1 trauma center after diving headfirst into shallow water. Prior to this accident, he was in excellent health. At the scene, he had been conscious but was paralyzed and had no sensation below his neck. The emergency medical services team immobilized Mr. C's neck with a cervical collar and intubated him for airway protection before transport. As Mr. C's medical care proceeds, he expresses a desire for extubation, although it was (...) not clear that he had the capacity to make this (or any other) decision. It also was unclear whether this desire reflected his authentic wishes to be allowed to die or stemmed from feelings of discomfort and agitation. Over a period of several days, Mr. C's sedation was lightened, and the psychiatry service conducted a formal decision‐making capacity assessment. Mr. C continues to express a desire to withdraw life‐sustaining medical treatment. However, the psychiatry service is concerned that Mr. C seems to lack adequate insight into what it would mean to die.What does it mean to respect Mr. C's autonomy? (shrink)

The truth of a myth, your Honor, is not its words but its patterns.Why would a novel want to undermine its own words? Surely, literature is made of words, and any ambitious novel would want to wear its words proudly, declaiming their truth as well as their beauty. Yet we know that novels produced in smaller languages, which possess fewer publishers and fewer readers, have needed to make their words accessible, both to distant audiences and to translators in dominant languages. (...) And some works in dominant languages, when they are produced in spaces far from the centers of publishing, have likewise had to retract idiomatic phrases, alter references to regional languages, and provide glossaries. But why would a.. (shrink)

The standard notion of autonomy in medical ethics does not require that autonomous choices not be irrational. The paper gives three examples of seemingly irrational patient choices and discusses how a rational autonomy analysis differs from the standard view. It then considers whether a switch to the rational autonomy view would lead to overriding more patient decisions but concludes that this should not be the case. Rather, a determination of whether individual patient decisions are autonomous is much less relevant than (...) usually considered in determining whether health care providers must abide by these decisions. Furthermore, respect for rational autonomy entails strong positive requirements of respect for the autonomy of the person as a rational decision maker. The rationality view of autonomy is conceptually stronger than the standard view, allows for a more nuanced understanding of the practical moral calculus involved in respecting patient autonomy, and promotes positive respect for patient autonomy. (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)

Rebecca Farinas takes seven major figures from the American philosophical canon and examines their relationship with an artistic or scientific interlocutor. In so doing, she provides a unique insight into the origins of American philosophy and, through case studies such as the friendship between Alain Locke and the biologist E.E. Just and the collaboration between Jane Addams and George Herbert Mead, sheds new light on these thinkers' ideas.

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)

In phase I clinical trials, healthy volunteers are dosed with investigational drugs and subjected to blood draws and other bodily monitoring procedures. In exchange, they are paid. Healthy volunteers are, in a very direct sense, selling access to their bodies for pharmaceutical companies and their associates to run drugs through. In his ethnographic study of socalled professional guinea pigs, Roberto Abadie writes, "Paid volunteers are well aware of the demand for an idealized, perfectly healthy volunteer. They also realize that their (...) body is a valued commodity in clinical trials research". It is perhaps surprising, then, that commodification is little discussed in the bioethics literature on phase I... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Breathing TogetherRebecca L. Walkowitz (bio)For the first seven years of my career, I taught a very large lecture course once, and sometimes twice, a year in a graded auditorium filled seat-to-seat with as many as 350 undergraduates. The course focused on a cluster of themes that linked art and violence–how art resists violence, how art animates violence, how art expresses violence, how violence spurs art– and traced those themes (...) through the history of British fiction from Joyce, Woolf, and Forster through Barker, Burgess, Ishiguro, and Rushdie. I loved teaching that class. I loved and was sometimes terrified and almost always invigorated by being in that room with those students. Needless to say, no one wore masks. Far from it.I remember the feel of the crowded, anonymous, yet intimate room. Intimate, because a group of 20 or 30 very avid students occupied the first few rows, and I came to value and recognize their attentive faces. I could hear their little sounds as they scratched out notes, adjusted their laptops, whispered to each other, and rustled papers. Intimate, because I was standing at my full, not very substantial height on a stage, and they were looking up at my body and listening to my voice for 50 minutes twice a week. And intimate, in another sense, because they would sometimes forget that we were there together live and behave in ways that I have never experienced in a smaller classroom. One day, two students in the last row, which in the slanted auditorium was directly level with my elevated gaze, spent most of the lecture kissing ardently. I was impressed by their enthusiasm and by the duration of their embrace. At the end of the lecture, I quick-stepped up the aisle to remind them: this is not TV; we are here together. I smiled while I said it, and they apologized for distracting me. I smile as I think about it now.During the COVID lockdown, I missed the embodied experience of large gatherings, including large lectures. The Zoom classroom, for all its affordances, can't replicate the accidental encounters, the risk and energy of embodied presentation, the warmth of individual eye contact, and the shoulder experiences of the class period: what happens in the time just before and the time just after the actual class takes place. The shoulder experiences are truly precious, as any seasoned teacher knows, because [End Page 258] they allow us to shift the scale of encounter up and down, and they allow us to interact in spontaneous and less formal ways than we do when the entire class is gathered as one. Close up and informally, we are more likely to use our faces and our hands: smiling, nodding, tilting, waving, and pressing our palms together to say thank you.There is a kind of social intimacy and a kind of social violence that can only be illustrated in a very large group, and I appreciated my lecture for allowing me to experience that. The most terrifying day of my class each semester was the day I spoke about– and performed!–the shock of involuntary, inchoate expression in E. M. Forster's A Room with a View. Like other Bloomsbury artists, Forster was committed to ushering out traditional ideas of self-restraint and maturity and ushering in greater communication between men and women, between social classes, and between ages about sexuality, desire, and the experiences of the body. The word of the day was "play": life needed more play, more honesty, more curiosity, and less seriousness, less decorum, and less lying to ourselves and others.What does this look like in the classroom? On the day in question, we would talk about the scenes in the novel in which characters are criticized for disruptive actions they cannot or do not control, such as fainting, laughing, bleeding, getting carried away, or expressing sounds in addition to words. I would explain that there are two problems with these actions: they are accidental or unintentional, and they involve an unexpected, unregulated expression of the body in public. Even worse, the actions take place in what our grandparents used to call "mixed... (shrink)

This book review essay discusses Principles of Animal Research Ethics (2020), by Tom L. Beauchamp and David DeGrazia.

. This paper follows the journey of two small fluid units throughout the nineteenth century in Anglo-American medicine and pharmacy, explaining how the non-uniform “drop” survived while the standardized minim became obsolete. I emphasize two roles these units needed to fulfill: that of a physical measuring device, and that of a rhetorical communication device. First, I discuss the challenges unique to measuring small amounts of fluid, outlining how the modern medicine dropper developed out of an effort to resolve problems with (...) the “minimometer,” which measured minims. Second, I explain how drops, utilized in “the open drop method” of administering general anesthesia, effectively communicated a gradual process and epistemically valuable heuristic to the audience of practitioners, whose attention to individual medical outcomes was important for verifying the proper dosage. The standardized minim was never able to achieve success as the drop’s intended replacement; the non-uniform drop better served the relevant epistemic goals within the practical contexts for which these units were designed. The surprising historical trajectory of drops should cause us to question the common equivocation of “standardization” with “progress” in the history and philosophy of measurement. This study also exemplifies how examining non-standard measurement practices can be instructive for better understanding the role and function of standardization within epistemology of measurement. (shrink)

The country of Botswana currently has one of the highest HIV infection rates in the world. Government and international aid agencies have undertaken initiatives to address the rapidly growing epidemic, but few measures address the current crisis of care as a key element in that process. In this article, the author uses case study data to highlight how women in Northern Botswana are affected by the increasing burden of caregiving to children who are orphaned as a result of the HIV/aids (...) epidemic. In particular, she describes how the role of women as caregivers in communities has been transformed as a result of the HIV/aids crisis. She suggests that the intersecting cultural patterns of migration and reproduction are central to understanding the spread of the disease in the current emerging crisis of care. (shrink)

Background: Prior research has explored reasons why health care providers may or may not choose to seek an ethics consultation. Although low-quality communication is evident in many ethics consultations, it is unknown whether poor communication in clinical settings is related to health care providers' requests for ethics involvement. Objective: To assess the relationship between self-reported ratings of health care providers' inter- and intraprofessional communication and ethics consultation requests. Method: This cross-sectional survey was conducted using a self-administered questionnaire of physicians and (...) nurses in six intensive care units at one academic medical center in the United States. The questionnaire assessed perceptions about requesting ethics consultations and how health care providers perceive communication. Results: Two hundred sixty-two participants (228 nurses and 34 physicians) responded to the survey (response rate 55%; 59% for nurses and 41% for physicians). Requests for an ethics consult were positively associated with perceived quality of interprofessional communication (r =.13, p <.05), but perceptions of the number of ethical dilemmas that occur on participants' units each month were negatively associated with the perceived quality of intra-professional communication (r = −.17, p <.01). Conclusion: The relationship that was hypothesized between perceived poor communication and increased number of ethics consultations was not borne out by these data. Indeed, we found the opposite; these finding suggests that good inter- and intraprofessional communication may promote the use of outside resources, such as ethics, when they are needed. (shrink)

Drawing on theoretical work on humans’ adaptive capacity, we propose that supervisors’ perception of top management’s high bottom-line mentality (BLM) has a dysfunctional effect on their ethical leadership practices. Specifically, we suggest that these perceptions hinder supervisors’ empathy, which eventuates in less ethical leadership practices. We also investigate, in a first-stage moderated mediation model, how supervisors high in trait mindfulness are resistant to the ill effects of perceptions of top management’s high BLM. Supervisors high (versus low) in this trait are (...) less likely to respond to perceptions of top management’s high BLM with reduced empathy that then hinders ethical leadership. Results from a multi-wave, multi-source sample of working adults from the Chinese high technology industry provide general support for our theoretical model. Theoretical and practical implications are discussed. (shrink)

Analyses of Kafka’s The Trial often read the text as an existentialist work, arguing that the novel metaphorizes the absurdity of a modern world where God no longer exists. However, I agree with Slavoj Žižek, who posits that such a modernist reading ignores what is most vital in Kafka’s text—that the absence of God is “always already filled by an inert, obscene, revolting presence”. I argue that this “revolting presence” for Josef K is the presence of the Court; The Trial (...) describes the subject within a society organized by the symbolic order, the big Other, the symbolic network of rules regulating our lives and structuring our reality. For this reason, I read The Trial as pointing the way toward critical postmodernism. But a strictly postmodernist reading of The Trial cannot work without the Lacanian intervention of the split subject. Readings of The Trial based solely on the framework of Foucault’s power/knowledge theory, without a consideration of Lacanian subject formation, are incomplete. Foucault posits that individuals only become subjects via discourse, becoming subjects either through interpellation or via relationship to power. This begs the question, how does an individual become the desiring subject? How does a defendant such as Josef K. come to accept the power of the Court? I answer these questions by applying a necessary psychoanalytic intervention to Foucauldian readings of The Trial, interpreting the text as the narration of Josef K.’s unconscious experience as a split subject in relation to the big Other. (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)

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)

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)

Despite some improvements in access to evidence-based medications for opioid use disorder, treatment rates remain low at under a quarter of those with need. High costs for brand name products in these medication markets have limited the volume of drugs purchased, particularly through public health insurance and grant programs. Brand firm anti-competitive practices around the leading buprenorphine product Suboxone — including product hops, citizen petitions and Risk Evaluation and Mitigation Strategy abuses — helped to maintain high prices by extending brand (...) exclusivity periods and hindering generic drug entry. Remedies to address costly anti-competitive activities include adoption of the proposed CREATES Act and modernization of the Hatch-Waxman Act by the Congress, and implementation of substantive modifications to the Food and Drug Administration citizen petition filing procedures. Given the persistence of these abuses, prescriptive changes are favorable to the procedural and clarifying steps thus far favored by the federal government. Extrapolating from the 37% price declines attributable to generic entry for buprenorphine tablets in 2011, our calculations suggest that implementing these remedies to facilitate generic competition with Suboxone film would have resulted in savings of approximately $703 million overall and $203 million to Medicaid in 2017. (shrink)

Realist ideology critique (RIC) is a strand of political realism recently developed in response to concerns that realism is biased toward the status quo. RIC aims to debunk an individual's belief that a social institution is legitimate by revealing that the belief is caused by that very same institution. Despite its growing prominence, RIC has received little critical attention. In this article, I buck this trend. First, I improve on contemporary accounts of RIC by clarifying its status and the role (...) of motivated reasoning. Second, I show that realist ideology critics face a dilemma: either their account makes deeply implausible epistemological assumptions, or they temper its epistemology at the expense of rendering it toothless. I argue for each horn in turn before revealing the dilemma to be a false one by making a novel distinction between varying strengths of RIC based on their underlying epistemological assumptions. I propose Moderate RIC as a solution: upon discovering that one reason for your belief that a social institution is legitimate is likely malignantly epistemically circular, the belief should undergo further epistemic testing. I respond to three potential objections and suggest that Moderate RIC would make a fruitful addition to political theorists' methodological toolkit. (shrink)

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. (shrink)

Craig Hanks and Aili Bresnahan are contributing editors only -- not main editors.

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)

In lieu of an abstract, here is a brief excerpt of the content:“Please Help Me”Rebecca L. VolpeTwo–year–old Jay was born prematurely at 26 weeks gestation, addicted to opiates. After several months in the Neonatal ICU, he was sent home, ventilator–dependent but with a high likelihood of survival and a low chance of severe, lasting disability. When Jay was 1½, he had a cardiopulmonary arrest at home. The parents of children who are on ventilators at home receive extensive education and (...) training about how to respond to something like an arrest. They are taught that a quick response is often critical to their child’s long–term prognosis. And yet, Jay’s parents took such a long time to respond to his code that Jay now has severe hypoxic ischemic encephalopathy: his brain was deprived of oxygen for so long that he has no higher cortical function, and will never think, speak, walk, or play.Currently, Jay is ventilator–dependent and has a very poor prognosis. Jay goes back and forth between a nursing home and the hospital. During one of his many hospitalizations, the ICU team decided to call an ethics consultation, because they felt that continued aggressive intervention was no longer in Jay’s best interests. I was the person on the other end of the line when the medical team called. After having a brief conversation with the attending physician, I left my office and walked to the Pediatric ICU to visit Jay. I arrived at the bedside—really just a large crib—and saw a baby with dark hair lying flat on his back. His tongue was swollen and protruding from his mouth, his eyes were puffy and closed, and his limbs were limp. On his belly was a piece of paper with the words, “BECKY PLEASE HELP ME” typed in huge, bold font. I looked up, into the eyes of the attending physician and said, “Did you type that?” The physician nodded yes. Much could be said about this physician’s behavior. But the bottom line—from a clinical perspective, at least—is that this ICU team was desperate, and that they had significant expectations that I would be able to help them.I began the work of the consultation. I reviewed the medical record, spoke with members of the treating team, and set up a time to talk to the family. During the family meeting, I learned that Jay’s parents wanted to continue to treat aggressively, and that they believed it was not their place to decide when it was their son’s time to die. That was [End Page 122] God’s decision. They could not fathom removing interventions that were maintaining their son’s life. They acknowledged that his quality of life was not high, but, still, it was life.The preferences of the treating team were in stark contrast to the parents’ preferences. The neurologists believed Jay did not have the capacity to experience physical pain, but the ICU team believed that continuing to treat Jay was cruel. Although the ICU team acknowledged that Jay was probably not suffering, they noted that we could not know for sure, and that sometimes Jay grimaced and withdrew—signs that are often interpreted as suffering. The ICU team also argued that given all the sick children in the world, and the scarcity of healthcare resources, it didn’t make sense to invest hundreds of thousands of dollars into prolonging Jay’s life. Additionally, they discovered that Jay had osteopenia (weak, brittle bones)—which was causing multiple bone fractures. The ICU team anguished over the thought of Jay’s small, soft bones continuing to break despite their best efforts.The bioethicist in me knows that, as long as the patient isn’t suffering and the parents aren’t demanding futile interventions (they weren’t), our role as providers was not to judge the parents’ value system. I told the ICU team over and over that different people place different value on Jay’s type of life, and that it wasn’t for us to tell them that their value structure was wrong. I talked with other members of the clinical ethics consultation service. Then I brought the case to the entire institutional... (shrink)

The name of the first author was incorrect in the initial online publication. The original article has been corrected.

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)

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)

The American Journal of Bioethics, Volume 11, Issue 12, Page 69-70, December 2011.