As a neonatal neurologist, I serve families facing tragic decisions in which they must balance trade-offs between death and life with profound disability. I often find myself in complex discussions about future outcome, in which families sort through in real-time what information they value most in making such a choice. Will he laugh? Will he be in pain? Will he know how much he’s loved? In this month’s feature article, Brick et al share the results of an online survey aimed (...) at assessing public views on when a life is not worth living, in an effort to inform ongoing legal and clinical debates about withdrawal of life-sustaining treatment for children. These findings raise important questions about how we define and measure outcomes that matter to parents as they make these tragic decisions. It is challenging to interpret these findings in the absence of context of how decision-making for infants occurs in real-time. The nature of this study and its objective required that cases be substantially simplified. As the authors acknowledge, the prognoses and function of the children involved in these cases were often deeply contested. Prognostic uncertainty is common for children with significant …. (shrink)

Volume 19, Issue 5, May 2019, Page 62-63.

Initial vaccine allocations for the coronavirus disease 2019 (COVID-19) will be limited. It is crucial to assess the ethical values associated with different methods of allocation, as well as important scientific and practical questions. This Viewpoint identifies three ethical values, benefiting people and limiting harm; prioritizing disadvantaged populations; and equal concern for all. It then explains why these values support prioritizing three groups: health care workers; other essential workers and people in high-transmission settings; and people with medical vulnerabilities associated with (...) poorer COVID-19 outcomes. In contrast, two other groups, people over 65 without medical vulnerabilities and participants in clinical research, present more complex ethical questions. This prioritization also encompasses valuing direct benefits to vaccinated individuals, indirect benefits to individuals protected from spread of infection, and indirect health and socioeconomic benefits to those protected from harm as health system and societal functioning improve. Vaccine allocation that recognizes important ethical values and avoids arbitrariness, waste, and corruption can ensure that the distribution of a COVID-19 vaccine is both fair and perceived as fair. (shrink)

The possible integration of genomic sequencing (including whole‐genome and whole‐exome sequencing) into the three contexts addressed in this special report—state‐mandated screening programs, clinical care, and direct‐to‐consumer services—raises related but distinct legal issues. This essay will outline the legal issues surrounding the integration of genomic sequencing into state newborn screening programs, parental rights to refuse and access sequencing for their newborns in clinical and direct‐to‐consumer care, and privacy‐related legal issues attending the use of sequencing in newborns.

The U.S. FDA has issued emergency use authorizations for monoclonal antibodies for non-hospitalized patients with mild or moderate COVID-19 disease and for individuals exposed to COVID-19 as post-exposure prophylaxis. One EUA for an oral antiviral drug, molnupiravir, has also been recommended by FDA’s Antimicrobial Drugs Advisory Committee, and others appear likely in the near future. Due to increased demand because of the Delta variant, the federal government resumed control over the supply and asked states to ration doses. As future variants (...) with increased infectivity and/or severity emerge, further rationing may be required. We identify relevant ethical principles and priority groups for access to therapies based on an integrated approach to population health and medical factors. Using priority categories to allocate scarce therapies effectively operationalizes important ethical values. This strategy is preferable to the current approach of categorical rules based on vaccination, immunocompromise status, or older age, or the ad hoc consideration of clinical risk factors. (shrink)

In recent years, many studies have highlighted the changing nature of scholarly research, reflecting the new digital tools and techniques that have been developed. But researcher uptake of these tools is strongly influenced by existing information behaviour, itself affected by a number of factors, particularly discipline. This article outlines findings from a recent study which used six case studies to look at the information behaviours of researchers working in different disciplinary fields or academic departments, or using specific tools. The study (...) suggested that researchers’ uses of, and attitudes towards, digital technologies are affected by existing disciplinary habits and preconceptions. Furthermore, it found that the computational and collaborative complexity of the tools that researchers used was linked to their disciplinary backgrounds. (shrink)

Is the relationship of self-moving (kinaesthesis) to itself a direct pre-reflective self-awareness, or is it mediated through an Other? This article attempts to address this question, taking the phenomenon of dance as a point of departure, since in dance, movement steps out of its everyday background function to become the principal theme. Rudolf zur Lippe extracts from a dance step of the dances of the Quattrocento, the posa, a concept of sensual reflection. Rather than a conceptual reflection, the posa can (...) be understood as an awareness of one’s own movement. In this article, in a dialogue between critical philosophy, dance science, and phenomenology, terms of a possible sensual reflection in dance will be discussed. (shrink)

For much of 2021, allocating the scarce supply of Covid‐19 vaccines was the world's most pressing bioethical challenge, and similar challenges may recur for novel therapies and future vaccines. In the United States, the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices (ACIP) identified three fundamental ethical principles to guide the process: maximize benefits, promote justice, and mitigate health inequities. We argue that critical components of the recommended protocol were internally inconsistent with these principles. Specifically, the ACIP (...) violated its principles by recommending overly broad health care worker priority in phase 1a, using being at least seventy‐five years of age as the only criterion to identify individuals at high risk of death from Covid‐19 during phase 1b, failing to recommend place‐based vaccine distribution, and implicitly endorsing first‐come, first‐served allocation. More rigorous empirical work and the development of a complete ethical framework that recognizes trade‐offs between principles may have prevented these mistakes and saved lives. (shrink)

We propose 4 equity-advancing operational improvements to eligibility and sign-up processes at mass vaccination sites: (1) preregistration using existing information, (2) eligibility rules that recognize the greater burden of COVID-19 in underserved neighborhoods, (3) appointment assignment that prioritizes those with disadvantage, and (4) socioculturally informed outreach to lottery selectees.

Lemmon argues that dilemmas occur between classes of 'oughts;' duties, obligations, and moral principles. He claims that there are not conflicts within each class, presumably because he is a utilitarian, and thinks that moral principles will always be univocal.

Quality and service improvement (QSI) research employs a broad range of methods to enhance the efficiency of healthcare delivery. QSI research differs from traditional healthcare research and poses unique ethical questions. Since QSI research aims to generate knowledge to enhance quality improvement efforts, should it be considered research for regulatory purposes? Is review by a research ethics committee required? Should healthcare providers be considered research participants? If participation in QSI research entails no more than minimal risk, is consent required? The (...) lack of consensus on answers to these questions highlights the need for ethical guidance. Three distinct approaches to classifying QSI research in accordance with existing ethical principles and regulations can be found in the literature. In the first approach, QSI research is viewed as distinct from other types of healthcare research and does not require regulation. In the second approach, QSI research falls within regulatory guidelines but is exempt from research ethics committee review. In the third approach, QSI research is deemed to be part of the learning healthcare system and, as such, is subject to a different set of ethical principles entirely. In this paper, we critically assess each of these views. While none of these approaches is entirely satisfactory, we argue that use of the ethical principles governing research provides the best means of addressing the numerous questions posed by QSI research. (shrink)