bluuebunny/crossref_metadata_2025_split huggingface dataset:
Qualms of a Believer in Narrative Ethics
Authors: Mitchell Christine 
Published: October 2014

AbstractIt seems to be a fundamental feature of being human to make meaning out of experiences and events by telling stories. We are born into a web of narratives‐to become a self is, it can seem, to hear others' stories about you and, eventually, to insert yourself into those webs and assert your own story. When we teach ethics illustrated by cases, we tell stories. When children and parents talk about how they came to hospital, what they hoped, how things have gone, what worries them about the decisions we ask them to face, we hear stories. Stories often reveal best the meaning a person attaches to his or her experiences, and stories shape the meaning those experiences will come to have for that person or family as the story is told, retold, and refined. I share the belief of narratologists that most of us are, at our core, storytellers. And I can't help but notice that many of those stories contain moral evaluations, explicitly or implicitly.
Narrative Reciprocity
Authors: Charon Rita 
Published: October 2014

AbstractI have become curious about reciprocity within clinical practice. A vast topic that mobilizes considerations of money, knowledge, kinship, power, culture, and uses of the body, reciprocity is a strong means by which to achieve the egality required of just health care. Within health care, reciprocity might enable not only so‐called shared decision‐making and patient autonomy. It might open the door to mutual acknowledgement of the value of each participant's beliefs and habits. It might appear as a humble realization that no one understands what health is and a concurrent welcoming curiosity about one another's conception of how the body and speech and mind work. From the intimate to the international levels of care, such forms of reciprocity may culminate in the radical and powerful state of reciprocal recognition.In this short essay, I will focus on one aspect of reciprocity in health care: the narrative and potentially reciprocal nature of attention in health care. A critical element in the development of therapeutic alliance, clinical accuracy, and effective practice, attention requires a donation of the self as a vessel into which can enter that which is perceived or, from the other side, a penetrating of that which is perceived so that one sees it from within its own vessel.
Narratives Hold Open the Future
Authors: Halpern Jodi 
Published: October 2014

AbstractPrinciples are static; narratives move. They show us how people change; they depict character development and moral growth (or decline). They do this by pulling us inside lived time, where we empathize with a character's dilemmas about, and responsibility for, his or her future. This feature of narratives fits well with ethics, for ethics begins with practical questions about what to do or how to be (or even whether to be). Such questions require that one view the future as something one has some freedom to shape. Narrative and principle‐based ethics support each other, and both are necessary, but in this essay I will focus on one side and consider how narrative dynamism enlivens a static bioethical principle, opening up new possibilities for moral action.
Autonomous Choice and the Right to Know One's Genetic Origins
Authors: Ravitsky Vardit 
Published: October 2014

AbstractIn “The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?,” Inmaculada de Melo‐Martín deconstructs the interests the right is supposed to protect. She argues that these interests are not set back or thwarted when one has no access to one's genetic origins. The basis of her argument is that we lack robust empirical evidence that donor‐conceived individuals suffer certain alleged harms, and that even when such harms are present, they do not provide strong enough justification to ground the right.Indeed, the research on the needs, preferences, and well‐being of donor‐conceived individuals is scant. In fact, we lack robust empirical evidence regarding all aspects of donor conception. I argue, however, that the right to know one's genetic origins does not rest on empirical evidence. Some donor‐conceived individuals who are unable to know their genetic origins may suffer great harms. Others may suffer no harm at all. But all are treated wrongly when they are deprived of the ability to access information about their genetic origins. They are deprived of an important aspect of their autonomy: the liberty to choose what meaning they assign to the genetic components of their identity.
Ethics & Evidence in Medical Debates: The Case of Recombinant Activated Factor VII
Authors: Ghinea Narcyz , Lipworth Wendy , Kerridge Ian , Little Miles , Day Richard O. 
Published: October 2014

AbstractWhile ethics and evidence‐based medicine are often viewed as separate domains of inquiry and practice, what we know influences what we can ethically justify doing, and what we see as our moral obligations shapes the way we interpret evidence. The boundaries between the moral and epistemic spheres become particularly blurred when the health of people is at stake and even more so when no “officially” recommended medical intervention is available to help a patient in need. The treatment of major hemorrhages using recombinant factor VIIa (rFVIIa), which was originally approved under orphan drug legislation to treat hemophilia, is a case in point.Following reports in the late 1990s that rFVIIa was success­fully used to stop bleeding in gunshot trauma, there was much excitement about its potential to help patients with uncontrolled bleeding in other clinical settings, leading to wide‐spread off‐label use of the drug. In recent years, new evidence has raised questions about the off‐label use of rFVIIa for severe bleeding. Nonetheless, while some clini­cians are now adamantly opposed to prescribing rFVIIa for massive bleed­ing, many remain determined to continue the practice. This raises the question: why do clinicians have such variable responses to the same body of evidence?We analyzed the debate around off‐label use of rFVIIa and character­ized its main conceptual features and tensions. We did not seek to provide a normative analysis as to whether the evidence supports the case for off‐label prescribing, nor did we try to provide a historical analysis of how attitudes and clinical practice have changed. Rather, we sought to make visible the moral and epistemic values underpinning stakeholders’ opinions and practices. On the basis of our analysis, which is described in this ar­ticle, we suggest that debates such as those surrounding rFVIIa will not be resolved simply by conducting more studies and that, therefore, there is also a need for conceptual and pro­cedural frameworks that more sys­tematically incorporate values into clinical policy‐making.
Neuroimaging:Beginning to Appreciate Its Complexities
Authors: Parens Erik , Johnston Josephine 
Published: October 2014

AbstractFor over a century, scientists have sought to see through the protective shield of the human skull and into the living brain. Today, an array of technologies allows researchers and clinicians to create astonishingly detailed images of our brain's structure as well as colorful depictions of the electrical and physiological changes that occur within it when we see, hear, think and feel. These technologies—and the images they generate—are an increasingly important tool in medicine and science.Given the role that neuroimaging technologies now play in biomedical research, both neuroscientists and nonexperts should aim to be as clear as possible about how neuroimages are made and what they can—and cannot—tell us. Add to this that neuroimages have begun to be used in courtrooms at both the determination of guilt and sentencing stages, that they are being employed by marketers to refine advertisements and develop new products, that they are being sold to consumers for the diagnosis of mental disorders and for the detection of lies, and that they are being employed in arguments about the nature (or absence) of powerful concepts like free will and personhood, and the need for citizens to have a basic understanding of how this technology works and what it can and cannot tell us becomes even more pressing.
Brain Images, Babies, and Bathwater: Critiquing Critiques of Functional Neuroimaging
Authors: Farah Martha J. 
Published: October 2014

AbstractSince the mid‐1980s, psychologists and neuroscientists have used brain imaging to test hypotheses about human thought processes and their neural instantiation. In just three decades, functional neuroimaging has been transformed from a crude clinical tool to a widely used research method for understanding the human brain and mind. Such rapidly achieved success is bound to evoke skepticism. A degree of skepticism toward new methods and ideas is both inevitable and useful in any field. It is especially valuable in a science as young as cognitive neuroscience and its even younger siblings, social and affective neuroscience. Healthy skepticism encourages us to check our assumptions, recognize the limitations of our methods, and proceed thoughtfully. Skepticism itself, however, also must be examined.In this article, I review the most commonly voiced criticisms of functional neuroimaging. In the spirit of healthy skepticism, I will critically examine these criticisms themselves. Each contains at least a kernel of truth, although I will argue that in some cases the kernel has been overextended in ways that are inaccurate or misleading.
Public Trust and Institutional Culture
Authors: Capron Alexander M. , Hurley Elisa A. , Davis Amy L. 
Published: October 2014

AbstractBiomedical and behavioral research is a complex, multidisciplinary, and highly varied enterprise with but a single goal: to produce and disseminate knowledge about the causes, effects, prevention, diagnosis, and treatment of human illnesses and impairments. Success requires public trust in the process. When that trust has been shaken (or worse), the response has been to establish offices to exercise oversight of the various actors and to require them to adhere to regulations that specify, with various levels of detail, what they may or may not do.The two regulatory frameworks examined in this report by Barbara Bierer and Mark Barnes began separately, provoked by different scandals and abuses of public trust.
Obesity, Liberty, and Public Health Emergencies
Authors: Herington Jonathan , Dawson Angus , Draper Heather 
Published: October 2014

AbstractWidespread obesity poses a serious challenge to health outcomes in the developed world and is a growing problem in the developing world. There has been a raft of proposals to combat the challenge of obesity, including restrictions on the nature of food advertising, the content of prepared meals, and the size of sodas; taxes on saturated fat and on calories; and mandated “healthy‐options” on restaurant menus. Many of these interventions seem to have a greater impact on rates of obesity than does simply providing information about health risks and healthier lifestyles. The more interventionist policy options have, however, been implemented only slowly, in large part because of criticisms that they are unjustified infringements on the liberty of consumers. Food industry groups, free‐market think tanks, and the popular press regard measures that incentivize or penalize particular food and lifestyle choices as unjustifiable state regulation of purely self‐regarding behavior.To counteract the liberty‐oriented position, those who favor a more interventionist role for the state have recently argued for labeling obesity as a public health emergency. By labeling obesity as a public health emergency, policy‐makers could override concerns about individual liberty in order to pursue more interventionist policies designed to guide consumer choices toward healthier lifestyles. In this paper, we argue that, contrary to initial appearances, obesity possesses some of the morally relevant features of public health emergencies, though we do not argue that it actually constitutes one.
Identity or Behavior: A Moral and Medical Basis for LGBTQ Rights
Authors: Solomon Andrew 
Published: October 2014

AbstractThe progress of lesbian, gay, bisexual, transsexual, and queer rights entails the erosion of prejudice, and erosion is a slow process. Much press accrues to the dramatic advancement of gay marriage, but that progress reflects decades of committed activism that antedate the sea change. Social science, physical science, politics, philosophy, religion, and innumerable other fields have bearing on the emergence of healthy LGBTQ identities. The field of bioethics is implicated both in revolutionizing attitudes and in determining how best to utilize such ameliorated positions. For decades, the debate around homosexuality has centered on whether it is a choice or an inherent quality. A growing segment of the population believes that gay people are “made that way” and therefore do not deserve to be treated with the prejudice they might warrant if they had simply elected what others resisted. In effect, they are like disabled people, who can't help the challenges they face, and unlike murderers, who could choose not to kill.Anti‐gay arguments tend to hinge on a view of gayness as a behavior; the liberatory ones, on gayness as an identity. A behavior can be avoided; an identity is integral and therefore warrants acceptance—or even celebration. People have a right to their identities, even if they have the capacity to act out other, different identities. Bioethics is the field in which this distinction between gay acts and a gay self may be argued most directly.
Are Gay and Lesbian People Fading into the History of Bioethics?
Authors: Murphy Timothy F. 
Published: October 2014

AbstractIn many ways, we live in propitious times for gay and lesbian people. In 1996, the Supreme Court struck down Colorado law prohibiting any kind of protected status based on sexual orientation. In 2003, the Supreme Court held that states may not criminalize sexual conduct between consenting adults of the same sex in private, so long as no money changes hands. In 2010, the Congress repealed the “Don't Ask, Don't Tell” policy that excluded openly gay men and lesbians from military service. In 2013, the Supreme Court struck down key elements of the Defense of Marriage Act that prohibited any federal recognition of same‐sex marriage. Most states do not allow same‐sex marriage, but more and more states are joining the fold. Likewise, most U.S. states do not forbid discrimination based on sexual orientation, but the number that does is increasing. Arguably, no other social minority has made as much legal progress in so short a time.Despite these advances, the story of gay and lesbian people and the law is not yet finished, and the meaning of homosexuality for bioethics is still being written too. Concerns about gay and lesbian people remain important to bioethics in key domains, especially in seeing to the conferral of optimal health care benefits and in sorting through the priorities and social effects of research. Progress in these domains still involves lifting certain burdens of medical and social misjudgments about same‐sex attraction.
Medicine and Making Sense of Queer Lives
Authors: Nelson Jamie Lindemann 
Published: October 2014

AbstractAs practiced, medicine bumps along with the rest of us, doing its level best to cope with the contingencies of this often heartbreaking world. Yet it's a commonplace that much of medicine's self‐image, and a good deal of its cultural heft, come from its connection with the natural sciences and, what's more, from a picture of science that has a touch of the transcendental, highlighting the unmatched rigor of its procedures, its exacting rationality, and the reliability of its results.In contrast, the very idea of “queer” carries with it a little taste of the uncanny. What we're inclined to label queer resists understanding, not so much because it's too complicated, but because it tends to be too slippery to capture neatly in our conceptual nets—that queer ache in your side, for instance, or your partner's queer notion of doing laundry. The outmoded use of “queer,” as a way to refer disparagingly to gay people, carried similar uncanny connotations: the unnatural, the perverse.One might think, then, that the reclamation of “queer” as an umbrella term referring to the lesbian, gay, bisexual, and transgender spectrum has a pleasing depth to its irony—not only does it wrench the customary direction of evaluation conveyed by the word from condemnation to celebration, but it also hints that what you find comprehensible depends a good deal on who you are and where you're standing. What from the perspective of many heterosexual and cisgendered people may seem opaque, exotic, threatening—erotic love directed toward someone with the same kind of body you have, lives lived in ways that challenge the immutability of birth‐assigned gender—are to LGBT folk not uncanny at all, but as familiar as breathing.I like this conceit, but alas, it is too simple. It slights the variety of difficulties associated with making sense of queerness that can vex deeply thoughtful people of undoubted good will—as I found out some years ago when I first talked about my efforts to understand my own transgender identity with a ferociously intelligent, highly sophisticated friend.
Hormone Treatment of Children and Adolescents with Gender Dysphoria: An Ethical Analysis
Authors: Abel Brendan S. 
Published: October 2014

AbstractIn the context of transgender health, most people are not comfortable with allowing a twelve‐year‐old child with gender dysphoria to elect to undergo gender reassignment surgery. The likelihood is too high that the child would be unable to fully comprehend the scope of a decision that carries significant, permanent consequences, particularly because the decision to surgically change gender is based upon a conception of gender that can fluctuate during adolescent years. Conversely, however, most people would not contend that this fluidity is reason to wholly deny certain medical care such as hormonal treatments to transgender youth, a demographic with extremely high rates of violent behavior, self‐harm, and suicide. This paper will explore ethical considerations to this emerging debate of what therapeutic options should be offered to transgender children and adolescents.Pediatric endocrinologists have been treating gender dysphoric adolescents with puberty‐suppressing drugs and, to a lesser extent, with cross‐sex hormone therapies for more than twenty years. Clinicians and thought leaders have mentioned ethical components of this emerging practice in the few cohort studies and clinical review articles about the subject. However, ethics have generally been a secondary consideration in the medical academic literature. In this paper, I will provide a brief overview of the practice, summarize the current research on hormone treatment for transgender minors, and provide an ethical analysis of the practice.
Writing on the Margins
Authors: Kaebnick Gregory E. 
Published: October 2014

AbstractWhen a set of articles or essays in the Report revolves around some common theme, we have planned it that way only about half the time. With this issue, I realized halfway through its assembly that we would have two pieces on what one of the articles calls “the woman question.” Quite late in production, I realized that these two pieces were themselves part of a broader theme: several of the columns also address the health care of people who are socially marginalized in one way or another.
What's in a Number?
Authors: Weisberg Daniel 
Published: October 2014

Abstract“I'm a six,” Freddy Lowell says after a thoughtful pause. Seven milligrams of Dilaudid, a potent narcotic pain reliever, is already being pushed into a port in his chest by a visibly busy nurse. She registers his pain score with a grunt. She will be back in two hours to ask for an updated number. At some point during this time, his pain will creep back, so strong it will render him mute. When the nurse next inquires, he will respond with seven fingers, his face buried in his pillow.The Numerical Rating Scale has been a mainstay of clinical care since the late 1990s, when pain came to be referred to as the “fifth vital sign” alongside temperature, blood pressure, heart rate, and respiratory rate. But while the first four are measured with precise objectivity, pain is nuanced, complex, and personal, so much so that Freddy will quickly chastise anyone who tries to empathize with his plight. “Nobody knows what it's like,” he says decisively.
Glossed Over
Authors: Kirschner Kristi L. 
Published: October 2014

AbstractI open the glossy cover of my alma mater's alumni magazine. Images of new frontiers in medicine abound—state‐of‐the‐art research buildings and the latest in high‐tech hospital innovations. Nestled among the articles on cutting edge medicine is a feel‐good story about medical students. The article profiles volunteer medical students and their uninsured patients with chronic health conditions. At one site, they are touted as providing “the only medical care.” Indeed.I think back to my medical student days and cringe.
Prenatal Whole Genome Sequencing
Authors: Donley Greer , Hull Sara Chandros , Berkman Benjamin E. 
Published: October 2014

AbstractWhole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely to be incorporated into clinical care. This paper explores one particular subset of these issues: the implications of adopting this technology in the prenatal context without a good understanding of when and how it is useful.Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data. The wealth of new data could enhance reproductive decision‐making, promoting parents' freedom to make well‐informed reproductive decisions. We argue, however, that there is potential for prenatal whole genome sequencing to alter clinical practice in undesirable ways, especially in the short term. We are concerned that the technology could (1) change the norms and expectations of pregnancy in ways that complicate parental autonomy and informed decision‐making, (2) exacerbate the deleterious role that genetic determinism plays in child rearing, and (3) undermine children's future autonomy by removing the option of not knowing their genetic information without appropriate justification.