ObjectiveFatigue after burns is often attributed to the hyperinflammatory and hypermetabolic response, while it may be best understood from a bio-psychological perspective, also involving the neuro-endocrine system. This longitudinal multi-center study examined the course of fatigue up to 18 months postburn. The contribution of bio-psychological factors, including burn severity, pain, and acute PTSD symptoms, to the course and persistence of fatigue was studied in a multifactorial model.MethodsParticipants were 247 adult burn survivors. Fatigue symptoms were assessed with the Multidimensional Fatigue (...) Inventory during the acute phase and subsequently at 3, 6, 12, and 18 months postburn, and were compared to population norms. Age, gender, burn severity, acute PTSD symptoms and pain were assessed as potential predictors of fatigue over time in a latent growth model.ResultsAt 18 months postburn, 46% of the burn survivors reported fatigue, including 18% with severe fatigue. In the acute phase, higher levels of fatigue were related to multiple surgeries, presence of pain, and higher levels of acute PTSD symptoms. Fatigue gradually decreased over time with minor individual differences in rate of decrease. At 18 months, pain and acute PTSD symptoms remained significant predictors of fatigue levels.ConclusionsProtracted fatigue after burns was found in almost one out of five burn survivors and was associated with both pain and acute PTSD symptoms. Early detection of PTSD symptoms and early psychological interventions aimed at reducing PTSD symptoms and pain may be warranted to reduce later fatigue symptoms. (shrink)

Bioethics needs an expanded moral vision. It is now time for bioethics to take full account of the problems of health disparities and structural injustice that are made newly urgent by the COVID-19 pandemic and the effects of climate change. Nancy M. P. King, Gail E. Henderson, and Larry R. Churchill make the case for a more social understanding and application of justice, a deeper humility in assessing expertise in bioethics consulting, a broader and more relevant research agenda, and (...) greater appreciation of the profound health implications of global warming. (shrink)

Gene therapy is still a very crude way of treating very complicated problems. It's hard to get new genes to go where they're needed, and hard to keep them from going where they're not wanted. The worst‐case scenario is that they find their way into a patient's germ cells—eggs or sperm—and end up harming the patient's offspring. Yet this possibility is hard to study in human trials, and would be hard to deal with in the clinic. It should, instead, simply (...) be avoided. Doing so requires fundamentally changing our approach to gene therapy. (shrink)

_Bioethics, Public Moral Argument, and Social Responsibility_ explores the role of democratically oriented argument in promoting public understanding and discussion of the benefits and burdens of biotechnological progress. The contributors examine moral and policy controversies surrounding biomedical technologies and their place in American society, beginning with an examination of discourse and moral authority in democracy, and addressing a set of issues that include: dignity in health care; the social responsibilities of scientists, journalists, and scholars; and the language of genetics and (...) moral responsibility. (shrink)

Institutional review boards and investigators are used to talking about risks of harm. Both low risks of great harm and high risks of small harm must be disclosed to prospective subjects and should be explained and categorized in ways that help potential subjects to understand and weigh them appropriately. Everyone on an IRB has probably spent time at meetings arguing over whether a three-page bulleted list of risk description is helpful or overkill for prospective subjects. Yet only a small fraction (...) of all the time and attention lavished on risk disclosure has been devoted to discussing whether and when potential benefit to subjects can reasonably be claimed and, if so, how it should be described in the consent form and process.Traditionally, IRBs and regulators have worked to ensure that clear lines can be drawn between research that, by definition, carries no potential for direct benefit — because it uses healthy volunteers or because it is not foreseeably focused on the development of treatments — and research that does have the development of effective treatments as its goal. (shrink)

In this paper I attempt to show that the doctrine of informed consent, as practiced in the relationships between physicians and patients, often does not fulfill its main purpose, i.e., it does not safeguard the interests, rights, and dignity of patients. This happens because of clinicians' skepticism about the existence of the right to informed consent, patients' disinclination to make decisions, the current nature of health care, and the absence of clear guidelines about implementing informed consent. In the context of (...) this paper informed consent refers to the principle of respect for autonomy. (shrink)

This paper contributes to our understanding of participation in the Eucharist by examining the swallow. The paper begins with a thick description of the swallow as act, as phenomenon, and as symbol. This description reveals the swallow’s interstitial nature, which is then examined for its implications on the meaning of participation in the sacrament. The paper then recommends approaches to the Eucharist for Catholics for whom swallowing is difficult or impossible. The paper finally incorporates these findings with the ex opere (...) operato doctrine, demonstrating participation as efficacious interaction. National Catholic Bioethics Quarterly 13.2 (Summer 2013): 253–262. (shrink)

ABSTRACT: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. (shrink)

Clinical gene transfer research has both a unique history and a complex and layered system of research oversight, featuring a unique review body, the Recombinant DNA Advisory Committee. This paper briefly describes the process of decision-making about clinical GTR, considers whether the questions, problems, and issues raised in clinical GTR are unique, and concludes by examining whether the RAC's oversight is a useful model that should be reproduced for other similar areas of clinical research.Clinical GTR is governed by the same (...) oversight system as most clinical trials, with a significant addition: the RAC. Like other research with human subjects, GTR, if it is affiliated with a federally funded institution, must be approved by an institutional review board whose activities are governed by the common rule, that is, the federal regulations for protection of human subjects in research. Like other research intended to produce a drug, device, or biologic to be marketed in the United States, GTR is also overseen by the Food and Drug Administration. (shrink)

The three important target articles make a strong case for regarding racism as a public health crisis. Each calls for advocacy by the bi...

Informed consent in clinical research is widely regarded as broken, but essential nonetheless. The most recent attempt to reform it comes as part of the first revisions to the Common Rule since it became truly “common” in 1991. This change, the addition of a “key information” requirement for most consent forms, is intended to support and promote a reasoned decision-making process by potential subjects. The key information requirement is both promising and problematic. It is promising because it encourages clarity and (...) honesty about research participation, creativity in information disclosure, and mutual learning through the investigator-subject relationship. It is problematic because those goals — which have remained aspirational since the beginning — may be difficult to achieve in what has become an excessively compliance-oriented regulatory regime. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Scandal of White Complicity in US Hyper-Incarceration: A Nonviolent Spirituality of White Resistance by Alex Mikulich, Laurie Cassidy, and Margaret PfeilNancy M. RourkeThe Scandal of White Complicity in US Hyper-Incarceration: A Nonviolent Spirituality of White Resistance Alex Mikulich, Laurie Cassidy, and Margaret Pfeil new york: palgrave macmillan, 2013. 203 pp. $90.00As a white American Catholic ethicist, I often envy my Protestant counterparts’ legacy of acknowledging and fighting (...) racism. Catholic moral theology lacks Protestantism’s bodies of literature, activism, and bold ecclesial statements addressing racism in the United States. (For more on this, see Bryan Massingale’s Racial Justice and the Catholic Church.) The Scandal of White Complicity in US Hyper-Incarceration demonstrates how Catholicism might approach American racism using several elements of Catholic theology.The book opens with series editor Mary Jo Iozzo’s introduction to the Content and Context in Theological Ethics series, of which this is the fifth book. A personal and reflective foreword by Sr. Helen Prejean follows. Then the book’s argument begins with a description of the United States’ practice of mass incarceration and brief discussions of what is meant by “whiteness” and “complicity.” This book employs a phenomenological understanding of race and of whiteness, taking whiteness as habitus. The literature about this approach to race and to identity is enormous, but familiarity with that literature is not necessary to follow this book’s presentation, argument, or use of the idea.Each of the book’s three authors has written a two-chapter section. Alex Mikulich’s explanation of white habitus speaks on levels of social thought and of the individual’s experience. Laurie Cassidy’s section looks at the culture of hyperincarceration and the development of the “dangerous black man” myth, and Margaret Pfeil’s section on spirituality works from the beatitudes, John of the Cross, and a wide array of other sources to describe a political spirituality of resistance for white Christians.This book would be most useful to masters-level graduate students in theological ethics or anyone preparing to begin teaching in areas of ethics related to racism or criminal justice (particularly in Catholic institutional settings). Rather than drawing exclusively on Catholic social teaching to talk about white participation in racism, these authors more satisfyingly put many Catholic traditions into action. For example, the book demonstrates careful use of the concepts of complicity, responsibility, participation, and intention; it considers specific [End Page 195] actions while maintaining focus on systems’ structures; and it uses a wide range of Catholic thinkers, including Metz, Copeland, Soelle, Gutiérrez, Carmelite Sr. Constance FitzGerald, Lonergan, Day, and John of the Cross.This book assumes and asserts that racism still exists, that whiteness exists and aims to make itself invisible, and that racism is kept alive through social structures that flow from white habitus. However, the book does not assume the reader’s agreement with any of these. Instead, the book first makes the case that these things are true and then takes next steps toward responsive practices of resistance. Rhetorically tinged homiletic shortcuts are not used to bolster this argument. For example, in similar works, the question of moral culpability for racist social structures is sometimes managed only with a discussion of how such structures distribute benefits and harms unequally. In this book, that argument is not used alone but in tandem with a careful look at the intention of one’s participation in such structures.Minor problems exist. The book would have benefited from one more round of editing to eliminate minor punctuation and writing problems, and the Catholic moral concept of “scandal” receives little systematic attention despite its presence in the title. Otherwise, the book demonstrates well what Catholic moral theology could do if applied to American white racism. Here’s hoping that this is just the beginning of more such scholarship.Nancy M. RourkeCanisius CollegeCopyright © 2015 Society of Christian Ethics... (shrink)

Hastings Center Report, Volume 52, Issue 3, Page 3-3, May–June 2022.

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.

One of my favorite bioethics quotes is nearing 50 years old:Let us not forget that progress is an optional goal, not an unconditional commitment, and that its tempo in particular, compulsive as it may become, has nothing sacred about it. Let us also remember that a slower progress in the conquest of disease would not threaten society, grievous as it is to those who have to deplore that their particular disease be not yet conquered, but that society would indeed be (...) threatened by the erosion of those moral values whose loss, possibly caused by too ruthless a pursuit of scientific progress, would make its most dazzling triumphs not worth having.Despite its age, this invocation seems to me increasingly relevant as time... (shrink)

This volume brings together some of the most distinguished thinkers in the field of theology to consider the question of the meaning of life in the various global religions.

In recent years, scholars have begun to lay the groundwork to justify a distinct application of ethics to the field of public health. They have highlighted important features that differentiate public health ethics from bioethics, especially public health’s emphasis on population health rather than issues of individual health. Articulations of public health ethics also tend to emphasize the role of social justice compared to the predominance of autonomy in the bioethical literature. Now that the field of public health ethics is (...) developing a unique focus and a language of its own, including a code of ethics disseminated by the American Public Health Association, the future of public health ethics may well be global health ethics, focusing on issues of global justice. As public health ethics evolves from its nascent stage of reflection to a place of action and application in the national and global arenas, two interrelated developments will need to occur: public health professionals, including practitioners, policymakers, and scholars, will need a richer understanding of the ethical challenges practitioners face on a daily basis and scholars will need to develop useful tools that practitioners may employ for identifying and tackling these ethical challenges. (shrink)

Medical teams care for severely premature infants under conditions of emergency and uncertainty that make parental involvement very difficult. Parents can be invited into a decisional relationship with the team that enables them to assess more fully the meaning of their child's illness.

ABSTRACT: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. (shrink)