The pursuit of genetic knowledge has such emotional, social, scientific, and financial importance that it has been compared to the divine quest for the Holy Grail, and to the calamity of opening Pandora's Box. Therefore, it comes as no surprise that the recent announcement of a completed blueprint for the human genome has fueled calls for both increased research and increased precautions. This new era, which holds the potential promise of advances in medicine, agriculture and other areas, also requires the (...) careful investigation of a myriad of issues. Those issues such as informed consent, patenting, privacy, and confidentiality, have been explored in at least some detail. Others, such as equity, mutual respect, empowering education, consensus building, and planning for long-term survival, have not been as fully examined, nor have they been as comprehensively integrated into mainstream thinking. To facilitate this, we need to implement an ethical approach that leads us to ask critical questions about the appropriate use of our new tools. (shrink)

The term dual use technologies refers to research and technology with the potential both to yield valuable scientific knowledge and to be used for nefarious purposes with serious consequences for public health or the environment. There are two main approaches to assessing dual use technologies: pragmatic and metaphysical. A pragmatic approach relies on ethical principles and norms to generate specific guidance and policy for dual use technologies. A metaphysical approach exhorts us to the deeper study of human nature, our intentions, (...) goals, values ideals and social relations when considering dual use technology. Use of science and technology (S and T) is determined by two components of human nature: human intentions and choices. We have drawn a distinction between specific measures, goals and intentions with respect to technologies in order to show that moral judgment about technologies must precede their use. Understanding of our intentionality and values, and our moral ideals, as a measurable, tangible part of the real world is important for the prevention of any possible harm from S and T. In the context of dual use technologies, we stress the importance of three main understandings of human nature: vulnerability, responsibility and narrative identity. These can become a strong ontological “antidote” to technology’s poisoning of modern man. Each new technology can be measured and compared with man’s values, traditions and societal norms. This can be done bearing in mind the concept that human nature is not dualistic, but pluralistic. A system of ethical principles that includes the principles of good intentions, the correspondence of goals and means, the balancing of risks and benefits, simplicity, and contextuality, will help ensure that technologies are more humanistic and friendly to human beings. (shrink)

Clinical ethicists move in different environments and interface with a variety of stakeholders, and are therefore uniquely positioned to answer the call for equity and anti-racism. We describe why a clinical ethicist should contribute to anti-racism efforts and describe general approaches for addressing racism across institutional contexts, including: (1) addressing racism as a bedside clinical ethics consultant, (2) addressing a wider lens of anti-racism work across multiple ethics consults over time, and (3) addressing racism at the organizational level.

Fiester and Yuan discuss important ethical concerns regarding the use of behavior contracts in addressing conflict with patients and families labeled as “difficult” (Fiester and Yuan 2023). We agre...

Controversies surrounding the determination of death by neurologic criteria (DNC), also known as brain death, have become increasingly common over the last decade, occasionally leading to parental refusal of all or part of an evaluation or declaration of DNC. We performed a prospective, crosssectional study of pediatric neurologists and intensivists who participate in professional listservs to ascertain perspectives and practices concerning the evaluation of DNC, specifically on obtaining permission for evaluations and managing refusals. Of the 334 respondents who had performed (...) an evaluation for DNC, 35 percent reported they had experienced at least one parental refusal, and 64.4 percent reported that they did not seek permission to perform an evaluation. Pediatric neurologists, careproviders who had less experience doing evaluations, and careproviders who had experienced parental refusal of an evaluation were more likely to obtain permission from parents. Most (80.8 percent) of respondents reported that their institution had a DNC policy. We found variability in many aspects of DNC evaluations and declarations, as well as the handling of refusals. Lack of consistency may make it more difficult for careproviders and families. Greater understanding of parental refusal of DNC evaluation is essential to inform efforts to increase consistency. (shrink)

A core tenet of research ethics is that risks assumed by research participants are reasonable, balanced, and minimized in relation to benefit to the individual and to society. It is also generally accepted that people who cannot give their own informed consent ought only to be exposed to low risks in research, unless there is a compensating potential for direct benefit.However, there is no consensus on whether individuals should be able to voluntarily consent to high net risk in research—or, in (...) other words, to research that is not justified by direct benefits to the individual and must be justified by benefits to others in society. The Belmont Report—perhaps the most canonical document in research ethics—does not... (shrink)

Volume 20, Issue 6, June 2020, Page 17-19.

In “The Harm Principle Cannot Replace the Best Interest Standard: Problems With Using the Harm Principle for Medical Decision Making for Children,” Bester argues that conceptual and normative diffi...

Background: Understanding is an important goal of the informed consent process in research. We sought to assess the interrater reliability (IRR) and concurrent validity of two measures of understanding in child and young adult subjects and their parents. Methods: We conducted a cross-sectional survey and interview-based study of children and young adults participating in a clinical trial for cancer, along with one parent per child or young adult subject. We estimated the IRR of the Semi-Structured Comprehension Interview (SSCI) and the (...) MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). We also estimated concordance between the SSCI, the MacCAT-CR, and the Quality of Informed Consent (QuIC). Results: For our sample of 32 subjects (16 parent–child pairs), IRR estimates were high for total score on the SSCI (intraclass correlation coefficient [ICC] = 0.88, 95% confidence interval [CI] = 0.76–0.94), as well as on the understanding (ICC = 0.93, 95% CI = 0.86–0.97) and reasoning (ICC = 0.97, 95% CI = 0.94–0.98) subscales of the MacCAT-CR. IRR was lower for the appreciation subscale of the MacCAT-CR (ICC = 0.70, 95% CI = 0.47–0.84). Scores on the SSCI were strongly correlated with scores on the understanding subscale of the MacCAT-CR (Spearman's rho = 0.72, 95% CI = 0.48–0.85) and the QuIC (Spearman's rho = 0.66, 95% CI = 0.24–0.87). Mean administration time for the SSCI was 3.1 minutes (95% CI = 2.7–3.5 minutes). Conclusions: The SSCI is a valid and reliable measure of understanding for use with both pediatric and adult research participants. It is easy to administer and score consistently, even by nonprofessional raters. The SSCI is a promising tool for use by clinician-investigators to study, detect, and correct deficiencies in understanding among children, adolescents, and adults making decisions about research participation. (shrink)

Medical legal partnerships address individual legal needs that can create impediments to health. Little is known about outcomes from medical legal partnerships and their relationship to access to justice. This paper reports outcomes from one medical legal partnership from the perspective of the client, with specific emphasis on impact on health and concepts related to access to justice. We suggest a conceptual model for incorporating medical legal partnerships into a broader framework about access to justice.

In summer 2022, six points of consensus emerged from a symposium addressing the question, “In the context of U.S. pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?” (Salter et al. 2023). The authors of this statement wrote, however, that the points of consensus may require modification or may not apply in their entirety to children in state custody. This article addresses the consensus recommendations in the context of the thousands of children (...) removed annually from the custody of their parents. While the consensus statements developed at the symposium provide a good starting point for decision-making in the context of these children, some alterations and nuance must be applied to attend to the specific needs of this population. The article works through what special considerations and changes ought to be made to expand the reach of the original points of consensus without neglecting the particular conditions of children in state custody, as well as their parents and caregivers. (shrink)

The ethics of long-term Extracorporeal Membrane Oxygenation (ECMO) use, especially when organ recovery appears highly unlikely and the patient does not qualify for organ transplantation, are compli...

In “An Overview of Ethical Challenges Raised by Medicolegal Challenges to Death by Neurologic Criteria in the United Kingdom and a Comparison to Management of these Challenges in the USA,” Ariane L...

Children’s age and developmental capacity leave them incapable of making medical decisions for themselves. Decisions for children are traditionally made under the best interest standard. Ross calls into question whether the best interest standard can function as both a guidance and intervention principle, able to be applied across the spectrum of pediatric decision making. Ross describes constrained parental autonomy as an alternative model, arguing that it affords parents the ability to make decisions within the context of their family while upholding (...) a child’s current and future interests. Although the model provides a robust framework for intrafamilial decision making, I question whether it can be broadly applied to children living in non-intimate families. (shrink)

Caring for a child in a pediatric intensive care unit is emotionally and physically challenging and often leads to conflict. Skilled mediators may not always be available to aid in conflict resolution. Careproviders at all levels of training are responsible for managing difficult conversations with families and can often prevent escalation of conflict. Bioethics mediators have acknowledged the important contribution of mediation training in improving clinicians’ skills in conflict management. Familiarizing careproviders with basic mediation techniques is an important step towards (...) preventing escalation of conflict. While training in effective communication is crucial, a sense of fairness and justice that may only come with the introduction of a skilled, neutral third party is equally important. For intense conflict, we advocate for early recognition, comfort, and preparedness through training of clinicians in de-escalation and optimal communication, along with the use of more formally trained third-party mediators, as required. (shrink)

A couple and their five‐year‐old daughter are in a car accident. The parents are not expected to survive. The child is transported to a children's hospital, and urgent treatment decisions must be made. Whom should the attending physician approach to make decisions for the child? When such cases arise in, for example, the hospitals where we work, the social worker or chaplain is instructed to use the Illinois Health Care Surrogacy Act as a guidepost to identify a decision‐maker. But in (...) our state and the country overall, the limitations of such statutes leave hospital workers to make a judgment call among friends, family, and clergy who may come forward. While surrogate decision‐making statutes comprehensively address surrogate decision‐makers for adults, a patchwork of laws—permanency statutes, kinship provider statutes, standby guardianship statutes, and, in some cases, surrogate decision‐making statutes—provide variable decision‐making pathways for children. (shrink)

Decision making for children who suffer abusive head trauma invokes multiple ethical considerations. The degree to which parents are permitted to participate in decision making after the injury has occurred is controversial. In particular, in this issue of The Journal of Clinical Ethics, Grigorian and colleagues raise concerns about the potential for conflict of interest in end-of-life decision making if the parents are facing criminal charges that could be escalated if the child dies. There are additional concerns about the parents’ (...) capacity to make decisions that are best for the child, given that the injury occurred. We argue that there are important reasons not to exclude parents from the decision-making process and that, with appropriate safeguards in place, parents are integral to determining what is best for the child. (shrink)

In his writings, Pope Francis describes a culture of interfaith and intercultural encounter as the foundation of lasting peace, friendship, and reconciliation among peoples. Far from superficial, a culture of encounter is built upon the slow work of honoring differences and forming social bonds across differences. In the first part of this paper, the authors investigate correspondences between the theology of encounter in the teaching and witness of Martin Buber and Pope Francis, in which the sacred, the ground of reality, (...) and the potential for redemption are revealed in the engaged space “between” self and other. In the second part of the paper, they explore how these ideas are actualized in practices of nonviolence, such as dialogue. In conclusion, they identify how these ideas and role models suggest a road map to build a culture of nonviolence and just peace through encounter within fractured societies throughout the world today. (shrink)

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform public (...) policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity. The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of diversity as a limitation, we would add that this limitation is particularly problematic in this context. Minority views on this issue may differ significantly from the majority perspective. When the stakes are high (as is the case for questions about withdrawing life-sustaining therapy from infants over parental objections), use of public opinion data to directly inform policy requires, at a minimum, a representative sample reflecting both the true diversity of views within the public and a method to justly account for the alternate views of the minority. Even if the sampled population were more …. (shrink)

What role does traditional ecological knowledge play in the lives of smallholder farmers in post-conflict communities as they cope with the destructive impacts of war? In many cases, military weapons, such as unexploded bombs, are left behind in the surrounding landscape, forcing farmers to adapt their livelihood practices to the increased risk of death and injury. We analyze trends in the local production of knowledge in Ratanak Kiri province, Cambodia, an area heavily bombarded by the US Air Force during the (...) Vietnam War. We argue that the system of traditional ecological knowledge has adapted to include basic information on bomb identification, location, and management strategies. This factual approach gives individuals the flexibility to generate their own views on whether they perceive unexploded ordnance as a violent hazard and/or an economic commodity. In a relatively short 50-year time period, the body of knowledge has been quickly accumulated and culturally transmitted to family and neighbors. Our findings suggest that traditional ecological knowledge should not be reduced to a static and ancient form of collective memory. We call for the expansion of the concept of traditional ecological knowledge to include short-term and dynamic processes of knowledge generation. (shrink)

Background: This study attempts to understand if medical providers beliefs about the moral permissibility of honoring patient-directed refusals of life-sustaining treatment (LST) are tied to their beliefs about the patient’s decision-making capacity. The study aims to answer: 1) does concern about a patient’s treatment decision-making capacity relate to beliefs about whether it is morally acceptable to honor a refusal of LST, 2) are there differences between provider types in assessments of decision-making capacity and the moral permissibility to refuse LST, and (...) 3) do provider demographics impact beliefs about decision-making capacity and the moral permissibility to refuse LST. Methods: A mixed-methods survey using Likert assessment and vignette-based questions was administered to medical providers within a single health system in the upper Midwest (N = 714) to assess their perspectives on the moral acceptance and decision-making capacity in cases of withholding and withdrawing treatment and suicide. Results: Behavioral health providers report accepting of the moral permissibility of suicide (91.2%) more than either medical providers (77.2%) or surgeons (74.4%) (n = 283). Decision-making capacity was questioned more in the vignettes of the patients refusing life-saving surgery (36%) and voluntarily starvation (40.8%) than in the vignette of the patient requesting to deactivate a pacemaker (13%) (n = 283). Behavioral health providers were more concerned about the capacity to refuse life-saving surgery (55.9%) than medical providers (33.8%) or surgeons (23.1%) (n = 283). Conclusions: Respondents endorse the moral permissibility of persons to withhold or withdraw from treatment regardless of motive. Clinical concerns about a patient’s treatment decision-making capacity do not strongly correlate to views about the moral permissibility of honoring refusals of LST. Different provider types appear to have different thresholds for when to question treatment decision-making capacity. Behavioral health providers tend to question treatment decision-making capacity to refuse LST more than non-behavioral health providers. (shrink)

Concern has been raised that segregation of girls and boys into separate classes leads to increased gender stereotyping. We tested this in a sample of 365 seventh-grade students attending a junior high school that offers both gender-segregated (GS) and co-educational classes. It was found that for both boys and girls, the more GS classes they took in the fall, the more gender stereotyped they were in their responding in the spring (controlling for initial levels of gender stereotyping). We concluded that (...) GS likely heightens the salience of gender in the classroom thereby reinforcing and increasing gender stereotypes. As such, we argue that GS is a misguided approach to addressing any educational difficulties girls and boys might be having. (shrink)

Research suggests that the reaching hand automatically deviates toward a target that changes location during the reach. In the current study, we investigated whether movement intention can influence the target jump’s impact on the hand. We compared the degree of trajectory deviation to a jumped target under three instruction conditions: GO, in which participants were told to go to the target if it jumped, STOP, in which participants were told to immediately stop their movement if the target jumped, and IGNORE, (...) in which participants were told to ignore the target if it jumped and to continue to its initial location. We observed a reduced response to the jump in the IGNORE condition relative to the other conditions, suggesting that the response to the jump is contingent on the jump being a task-relevant event. (shrink)

To what extent do early intuitions about ownership depend on cultural and socio-economic circumstances? We investigated the question by testing reasoning about third party ownership conflicts in various groups of three- and five-year-old children (N = 176), growing up in seven highly contrasted social, economic, and cultural circumstances (urban rich, poor, very poor, rural poor, and traditional) spanning three continents. Each child was presented with a series of scripts involving two identical dolls fighting over an object of possession. The child (...) had to decide who of the two dolls should own the object. Each script enacted various potential reasons for attributing ownership: creation, familiarity, first contact, equity, plus a control/neutral condition with no suggested reasons. Results show that across cultures, children are significantly more consistent and decisive in attributing ownership when one of the protagonists created the object. Development between three and five years is more or less pronounced depending on culture. The propensity to split the object in equal halves whenever possible was generally higher at certain locations (i.e., China) and quasi-inexistent in others (i.e., Vanuatu and street children of Recife). Overall, creation reasons appear to be more primordial and stable across cultures than familiarity, relative wealth or first contact. This trend does not correlate with the passing of false belief theory of mind. (shrink)

Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good (...) outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine “protection” of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research. (shrink)

Objective: Compassion has been associated with eudaimonia and prosocial behavior, and has been regarded as a virtue, both historically and cross-culturally. However, the psychological study of compassion has been limited to laboratory settings and/or standard survey assessments. Here, we use an experience sampling method (ESM) to compare naturalistic assessments of compassion with standard assessments, and to examine compassion, its variability, and associations with eudaimonia and prosocial behavior. -/- Methods: Participants took a survey which included standard assessments of compassion and eudaimonia. (...) Then, over four days, they were repeatedly asked about their level of compassion, eudaimonia, and situational factors within the moments of daily life. Finally, prosocial behavior was tested using the Dual Gamble Task and an opportunity to donate task winnings. -/- Results: Analyses revealed within-person associations between ESM compassion and eudaimonia. ESM compassion also predicted eudaimonia at the next ESM time point. While not impervious to situational factors, considerable consistency was observed in ESM compassion in comparison with eudaimonia. Further, ESM compassion along with eudaimonia predicted donating behavior. Standard assessments did not. -/- Conclusion: Consistent with virtue theory, some individual’s reports displayed a probabilistic tendency toward compassion, and ESM compassion predicted ESM eudaimonia and prosocial behavior toward those in need. (shrink)