The creation and study of brain organoids may hold significant promise for understanding brain functions, disorders, and diseases. This research may also raise novel considerations and ethical concerns, but it has significant public and professional support when thoughtfully undertaken. Current legislative and judicial restrictions on abortion and pronouncements about fetal personhood could, however, have a surprisingly broad and unintended reach, even conceivably restricting the development and use of brain organoids and other biomedical and bioengineered research tools. Brain organoid research thus may constitute a cautionary tale about the risks of performative policy-making.

Health problems of global warming are daunting in severity and magnitude and will only get worse. Yet literacy about these problems is poor and plans to alleviate them are too early in development to be responsive to current levels of global threat and individual need. Social and ecological determinants of health and illness are exacerbated by excessive heat and flooding; lack of food, safe water, and secure shelter; and loss of arable land for farming. This article considers the nature and scope of ethicists' roles in awakening clinicians and the public to this crisis and offers 4 recommendations to reduce morbidity and mortality from climate change.

OBJECTIVES Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children. METHODS This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes. RESULTS Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers. SIGNIFICANCE OF RESULTS Caregivers' need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.

Our paper examines what is required to protect and promote effective public discussion and policy development in the current climate of divisive disagreement about many public policy questions. We use abortion as a case example precisely because it is morally fraught. We first consider the changes made by Dobbs, as well as those which led up to the Dobbs decision, accompany it, and follow from it.

Early Check is a voluntary, large-scale expanded newborn screening study in North Carolina that uses a self-directed web-based portal for return of normal individual research results (IRR). Little is known about participant perspectives in using web-based portals to receive IRR. This study explored user attitudes and behaviors within the Early Check portal using three methods: (1) a feedback survey available to the consenting parent of participating infants (typically mothers), (2) semi-structured interviews conducted with a subset of parents, and (3) Google Analytics. During an approximate 3-year period, 17 936 newborns received normal IRR and there were 27 812 visits to the portal. Most surveyed parents reported viewing their baby's results (86%, 1410/1639). Parents largely found the portal easy to use to get results, and helpful in understanding the results. However, 10% of parents said it was difficult to find enough information to understand their baby's results. In Early Check, providing normal IRR via the portal made a large-scale study practical, and was highly rated by most users. Return of normal IRR may be particularly amenable to web-based portals, as the consequences to participants from not viewing results are modest, and the interpretation of a normal result is relatively straightforward.

Good science fiction can be a successful vehicle for portraying justice. Science fiction can stimulate moral imagination in much the same way as the most effective justice theories, connecting the world in which we live with a range of alternative futures deliberately and creatively made plausible. A selective examination of classic and recent science fiction stories and novels provides contextual framing for considering questions of climate justice, virtuous personal action in the face of structural injustice, and the problem of what justice means when some people are regarded as "other." By connecting compelling images of individual responsibility with the complex challenges posed by striving for social justice, science fiction can also help render justice work appealing and achievable-an essential step that is reinforced in closing by a brief set of maxims.

The intrusive state has long viewed women as fetal containers. The Dobbs decision goes further, essentially causing women to vanish when fetuses are abstracted from their relationships to pregnant persons. The ways in which women are first controlled and then made invisible are clearly connected with the move from obedience to omission that has historically affected black Americans. When personal decisionmaking and participation in democracy are regarded as threats, those threatened restrict decisional freedom and political power, deepening structural injustices relating to sex, race, and poverty. Fear of Dobbs has health effects on conditions unrelated to pregnancy and connects with erasures of human value that are not health-related. We reaffirm solidarity as a countering influence. Taking account of the richly relational context in which issues like abortion and political representation arise should lead to better, more meaningful policies, making so many people impossible to unsee.

ABSTRACTShould research ethics scholars, clinical investigators, and human research professionals read a thick book by a moral philosopher on the foundations of research ethics? Absolutely. Why? Because everyone who has tried to figure out how research ethics and regulatory compliance fit together, or tried to keep up with the vast array of regulations, guidance documents, educational materials, and scholarly literature, already knows that the human research protections system is mined with contradictions, gaps, and confusions. It holds together well enough, but many dedicated folks have long struggled to MacGyver rickety spots of theory and practice known to be problematic. For the Common Good: Philosophical Foundations of Research Ethics, by Alex John London, comes to the rescue, offering an eloquently structured, amply justified, and ultimately persuasive theoretical foundation on which many necessary repairs can now be built.

Bioethics needs to expand its vision. We must examine and interrogate the social and structural barriers that help traditionally privileged communities maintain minoritized groups as inherently inferior "others." Justice requires the field to look beyond the walls of hospitals, clinics, and medical academia to address and ameliorate the structural injustices that give rise to health disparities long before differential access to health services becomes an issue for underserved patients. Doing so means engaging in challenging multidisciplinary collaborations in order to understand the sociohistorical complexities of health and illness, appreciate the factors that contribute to shaming and blaming those "others" who are not "us," and work to lessen the discomfort with uncertainty that impedes equity. All of this necessary work takes bioethics well beyond the well-trodden pathways of our usual scholarship and practice. But we simply have to reach higher to do health justice.

Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior 5 years. Four themes emerged: (1) Caregivers believed R&S to be powerful for their children's healing, and helped them cope with their children's illnesses; (2) Spirituality was an important factor for caregivers in the decision to pursue tracheostomy for their children; (3) Many caregivers did not discuss their spirituality with clinicians for a variety of reasons; (4) Clergy and hospital chaplains played a major supportive role overall; however, they did not play a significant role in the decision-making process. Our study shows the importance of R&S, and the roles of clergy and chaplains in pediatric tracheostomy decision-making.

Disclaimer: This statement is designed primarily as an educational resource for medical geneticists and other clinicians to help them provide quality medical services. Adherence to this statement is completely voluntary and does not necessarily assure a successful medical outcome. This statement should not be considered inclusive of all proper procedures and tests or exclusive of other procedures and tests that are reasonably directed to obtaining the same results. In determining the propriety of any specific procedure or test, clinicians should apply their own professional judgment to the specific clinical circumstances presented by the individual patient or specimen. Clinicians are encouraged to document the reasons for the use of a particular procedure or test, whether or not it is in conformance with this statement. Clinicians also are advised to take notice of the date this statement was adopted, and to consider other medical and scientific information that becomes available after that date. It also would be prudent to consider whether intellectual property interests may restrict the performance of certain tests and other procedures.

This article is the lead piece in a special report that presents the results of a bioethical investigation into chimeric research, which involves the insertion of human cells into nonhuman animals and nonhuman animal embryos, including into their brains. Rapid scientific developments in this field may advance knowledge and could lead to new therapies for humans. They also reveal the conceptual, ethical, and procedural limitations of existing ethics guidance for human-nonhuman chimeric research. Led by bioethics researchers working closely with an interdisciplinary work group, the investigation focused on generating conceptual clarity and identifying improvements to governance approaches, with the goal of helping scholars, funders, scientists, institutional leaders, and oversight bodies (embryonic stem cell research oversight [ESCRO] committees and institutional animal care and use committees [IACUCs]) deliver principled and trustworthy oversight of this area of science. The article, which focuses on human-nonhuman animal chimeric research that is stem cell based, identifies key ethical issues in and offers ten recommendations regarding the ethics and oversight of this research. Turning from bioethics' previous focus on human-centered questions about the ethics of "humanization" and this research's potential impact on concepts like human dignity, this article emphasizes the importance of nonhuman animal welfare concerns in chimeric research and argues for less-siloed governance and oversight and more-comprehensive public communication.

The goal of this chapter is to situate thinking about social determinants of health in the history of changing ideas about disease causation. Among many scholars who have contributed to this body of work, the authors include Rudolph Virchow, Edwin Chadwick, George Rosen, Nancy Krieger, Geoffrey Rose, Bruce Link, Jo Phelan, and Paul Farmer. The chapter considers how the collection of relevant data has evolved, how changing analytical methods have been applied to these data, and how innovative measurement perspectives demonstrate the associations between social factors and health outcomes. It discusses how race and racism fit into our understanding of social determinants, citing work by David Williams, among others. It describes the multidisciplinary, multimethod research employed by infectious disease expert Adaora Adimora to define factors related to HIV, race, and health disparities. Her twenty-year research trajectory illustrates implications for a social justice agenda. The chapter concludes with consideration of the social determinants of COVID-19, and the urgent need for sophisticated application of theory to emerging data. Taken together, the 150-year history of social epidemiology and social medicine provides empirical as well as normative perspectives to assist bioethicists in their journey to incorporate and apply a broader understanding of justice and health.

Caregivers of children with medical complexity (CMC) face decisions about life‐sustaining treatments (LST) like tracheostomy. We sought to develop a clinically relevant and realistic model for decision‐making about tracheostomy placement that might apply to other LST in CMC.

A challenge in implementing population-based DNA screening is providing sufficient information, that is, understandable and acceptable, and that supports informed decision making. Early Check is an expanded newborn screening study offered to mothers/guardians whose infants have standard newborn screening in North Carolina. We developed electronic education and consent to meet the objectives of feasibility, acceptability, trustworthiness, and supporting informed decisions. We used two methods to evaluate Early Check among mothers of participating infants who received normal results: an online survey and interviews conducted via telephone. Survey and interview domains included motivations for enrollment, acceptability of materials and processes, attitudes toward screening, knowledge recall, and trust. Quantitative analyses included descriptive statistics and assessment of factors associated with knowledge recall and trust. Qualitative data were coded, and an inductive approach was used to identify themes across interviews. Survey respondents (n = 1,823) rated the following as the most important reasons for enrolling their infants: finding out if the baby has the conditions screened (43.0%), and that no additional blood samples were required (20.1%). Interview respondents (n = 24) reported the value of early knowledge, early intervention, and ease of participation as motivators. Survey respondents rated the study information as having high utility for decision making (mean 4.7 to 4.8 out of 5) and 98.2% agreed that they had sufficient information. Knowledge recall was relatively high (71.8–92.5% correct), as was trust in Early Check information (96.2% strongly agree/agree). Attitudes about Early Check screening were positive (mean 0.1 to 0.6 on a scale of 0–4, with lower scores indicating more positive attitudes) and participants did not regret participation (e.g., 98.6% strongly agreed/agreed Early Check was the right decision). Interview respondents further reported positive attitudes about Early Check materials and processes. Early Check provides a model for education and consent in large-scale DNA screening. We found evidence of high acceptability, trustworthiness and knowledge recall, and positive attitudes among respondents. Population-targeted programs need to uphold practices that result in accessible information for those from diverse backgrounds. Additional research on those who do not select screening, although ethically and practically challenging, is important to inform population-based DNA screening practices.

This chapter examines the application of bioethics to research with human subjects. It first reviews the history of empirical bioethics research and bioethics scholarship, practice, and service relating to research ethics. It then argues that the failure to consider the social determinants of health and health disparities in health-related human research promotes a truncated research agenda. Although the Belmont Report endorses a relatively narrow application of justice to human research regulation and oversight, new attention to diversity, equity, and inclusion and the development of learning health care systems enable bioethics researchers to promote multidisciplinary collaborations linking public health and biomedical research efforts. Increasing the diversity of clinical trial participants is necessary in order to distinguish between individual and structural contributions to disease and to study more effective prevention. The chapter explores ways for bioethics scholars in all settings to engage more effectively with justice questions both in and through research, using the example of the ELSI research program, which has led the way by showing that the effects of structural injustice on health and illness are often more significant than genetic ancestry. Bioethics scholars can and should advocate more effectively for research to improve human health and social justice.

This chapter argues that the idea of lifeboat ethics has dominated bioethics and thereby distorted the moral significance of the problems bioethics routinely examines. Lifeboat ethics is the fixation on discrete choices, in slice-of-life, contextless scenarios of forced choices about scarce resources. Who should receive scarce Covid vaccines, or the last bed in an Intensive Care Unit? This preoccupation with such choices is largely shaped by the clinical context of much bioethics work and the need to be serviceable to medical decision-making. A short history of lifeboat ethics is traced, from the writings of Garret Hardin, the legal case US v Holmes, and the Swedish Hospital Ethics Committee decisions about the allocation of scarce renal dialysis in the late 1960s. A rationale for why lifeboat ethics is so appealing and so persistent in its dominance is offered, along with examples of how lifeboat framing shaped the moral understanding of the Covid pandemic. It is argued that a more socially embedded notion of moral personhood is needed. The work of Charles Taylor is presented as a corrective to the justice theories of John Locke, John Rawls, and others. Recognizing the powerful social determinants of health and illness also underlines the need for a socially nuanced understanding of justice, and the work of Madison Powers and Ruth Faden is presented as a paradigm for understanding justice in medicine and public health.

This article is referred to by:Looking Forward: A Response to Commentaries on “Race, Power and COVID-19: A Call for Advocacy within Bioethics”