bluuebunny/crossref_metadata_2025_split huggingface dataset:
Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation for Rare Diseases
Authors: LARGENT EMILY A. , PEARSON STEVEN D. 
Published: October 2014

AbstractThe rule of rescue describes the moral impulse to save identifiable lives in immediate danger at any expense. Think of the extremes taken to rescue a small child who has fallen down a well, a woman pinned beneath the rubble of an earthquake, or a submarine crew trapped on the ocean floor. No effort is deemed too great. Yet should this same moral instinct to rescue, regardless of cost, be applied in the emergency room, the hospital, or the community clinic?In health care, the desire to save lives at any cost must be reconciled with the reality of resource scarcity. As one example, the estimated cost for prophylactic Factor VIII to treat one patient with hemophilia for one year is $300,000. Costs of this magnitude have been accepted by public and private insurers in the developed world, even though, in principle, these sums could provide greater overall health benefit if allocated to pay for the unmet health care needs of many other patients. Looking forward, however, broad application of the rule of rescue will be increasingly untenable. But the moral instinct will remain: the desire to help those weakest among us, especially when their small numbers allow us to see them as unique individuals. What, then, is the ethical framework that can guide coverage and reimbursement decisions for orphan drugs into the future?
The Ethics of Advocacy for Undocumented Patients
Authors: Berlinger Nancy , Raghavan Rajeev 
Published: October 2014

AbstractApproximately 11.2 million undocumented immigrants have settled in the United States. Providing health care to these residents is an everyday concern for the clinicians and health care organizations who serve them. Uncertain how to proceed in the face of severe financial constraints, clinicians may improvise remedies–a strategy that allows our society to avoid confronting the clinical and organizational implications of public policy gaps. There is no simple solution‐no quick fix‐that will work across organizations (in particular, hospitals with emergency departments) in states with different concentrations of undocumented immigrants, varying public and private resources for safety‐net health care, and differing approaches to law and policy concerning the rights of immigrants. However, every hospital can help its clinicians by addressing access to health care for undocumented immigrants as an ethical issue. We offer some recommendations for doing this in a structured, fair, and transparent way. We also describe the problems that may result when clinicians are forced to grapple with this issue on their own.
Casting Light and Doubt on Uncontrolled DCDD Protocols
Authors: Rodríguez‐Arias David , Ortega‐Deballon Iván , Smith Maxwell J. , Youngner Stuart J. 
Published: October 2014

AbstractThe ever‐increasing demand for organs led Spain, France, and other European countries to promote uncontrolled donation after circulatory determination of death (uDCDD). For the same reason, New York City has recently developed its own uDCDD protocol, which differs from European programs in some key ways. The New York protocol incorporates a series of technical and management improvements that address some practical problems identified in response to European uDCDD protocols. However, the more fundamental issue of whether uDCDD donors are dead when organs are procured remains problematic for the New York City protocol and, indeed, for all uDCDD protocols.In the United States, two amendments to the legal criteria of death have been suggested to avoid a formal violation of the dead donor rule in DCDD protocols: first, replacing the requirement “irreversible” with the weaker term “permanent,” and second, using the term “circulatory” instead of “cardiac” to identify the key function that must be lost to declare death. While intended to facilitate controlled DCDD, these modifications create a problem for uDCDD protocols: if extracorporeal membrane oxygenation is introduced to preserve the organs, then circulation is restored after death is declared. In this issue of the Hastings Center Report, Kevin Munjal and colleagues call for a new ethical construct and policy so that uncontrolled and controlled DCDD can coexist.
An Ethics Framework for a Learning Health Care System: A Departure from Traditional Research Ethics and Clinical Ethics
Authors: Faden Ruth R. , Kass Nancy E. , Goodman Steven N. , Pronovost Peter , Tunis Sean , Beauchamp Tom L. 
Published: October 2014

AbstractCalls are increasing for American health care to be organized as a learning health care system, defined by the Institute of Medicine as a health care system “in which knowledge generation is so embedded into the core of the practice of medicine that it is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in care.” We applaud this conception, and in this paper, we put forward a new ethics framework for it. No such framework has previously been articulated. The goals of our framework are twofold: to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion.
H5N1 Avian Flu Research and the Ethics of Knowledge
Authors: Resnik David B. 
Published: October 2014

AbstractScientists and policy‐makers have long understood that the products of research can often be used for good or evil. Nuclear fission research can be used to generate electricity or create a powerful bomb. Studies on the genetics of human populations can be used to understand relationships between different groups or to perpetuate racist ideologies. While the notion that scientific research often has beneficial and harmful uses has been discussed before, the threat of bioterrorism—a concern that has only grown since 2001—has led to increased awareness about the need to prevent the misuse of biomedical research, particularly when it involves dangerous pathogens or toxins.In 2012, the concern was ratcheted up another notch by two papers reporting the results of research on genetically engineered strains of the H5N1 avian influenza virus. Although the H5N1 papers have potential scientific and social value, some scientists and policy‐makers opposed their publication because they feared that terrorists (or others with nefarious motives) could use the research to create a bioweapon that could trigger a global pandemic.The H5N1 papers raise difficult questions concerning the ethics of knowledge. Should scientific research with dangerous applications be published? Should some types of research be kept secret or not be conducted at all? What type of government oversight of dangerous research is appropriate? In this essay, I will develop a framework for thinking about the ethics of knowledge and apply it to the H5N1 controversy, focusing on issues related to publication. I will argue that redacted publication would have been a reasonable response to the dilemmas posed by the H5N1 papers if not for practical and legal problems with this option. Given these problems, full publication seems appropriate.
Futility on the Border
Authors: Klugman Craig M. , Bard Jennifer S. 
Published: October 2014

AbstractMiguel is an eighteen‐year‐old male transferred to Alamo Hospital for antivenom treatment after a rattlesnake bite while sleeping on railroad tracks. His “coyote,” an individual who guides undocumented people across the U.S. border from Mexico, dropped him off at a clinic. By the time Miguel was transferred from the clinic to Alamo, he was in complete paralysis and at risk for heart failure, requiring ventilator support to breathe. A person who receives treatment for a snake bite within one to two hours has a 99 percent chance of recovery, but for Miguel, at least fifteen hours had already passed.A hospital ethicist at Alamo contacted the Mexican consulate, and together they arranged for Miguel's father to come to Alamo and make decisions for him. His physicians have determined that he is in a persistent vegetative state and can no longer benefit from hospital treatment. However, no long‐term care facility will accept him. Miguel is undocumented and unfunded.Miguel's father wishes to take his son home, but the cost of transporting him is high ,and their home state in Mexico has no ventilator available for him and no consistent supply of electricity to run it. What should the hospital do?
Incidental Findings in the Era of Whole Genome Sequencing?
Authors: Parens Erik , Appelbaum Paul , Chung Wendy 
Published: October 2014

AbstractThe rise of technologies that can inexpensively sequence entire genomes means that researchers and clinicians have access to ever vaster stores of genomic data, some of which could be of great use to research participants or patients, and most of which, at least for today, will be of little, uncertain, or no use. Those facts are essential features of a new ethical territory we are now entering with genetics research. As we explore that territory, we should try to be as clear as possible about the issues at hand.Clarity about the ethical issues that delineate this new territory requires that we be wary about too hastily importing into it concepts from the old territory. We want to suggest a way in which the term “incidental findings” can impede our ability to see clearly some of the most important issues we face. To show how that term can sometimes obscure more than it illuminates, we focus on how it is being deployed in the context of research. Although it may have been useful, when considering older forms of genetic research, to speak about researchers stumbling across clinically significant findings, and although that way of speaking has certainly not yet become wholly obsolete, it is ever less appropriate as the technology becomes ever more powerful.
The “Good Planning Panel”
Authors: Smith Thomas J. , Bodurtha Joann N. 
Published: October 2014

AbstractIn “Avoiding a Death Panel Redux,” Nicole Piemonte and Laura Hermer make the argument that the advance care planning consultation provision during the health care reform debate collapsed both because the language in the provision was deliberately misread and because some features of the language could in fact be misleading. We agree on both counts. We add that the cost‐effectiveness provisions of the bill make us face difficult decisions we as a nation would rather avoid, but can and must face squarely and together.It is time for an honest national conversation about at least two issues concerning medical care near the end of life. First, talking about or planning a good death with your doctor or nurse will not make death happen sooner. The data show that better planning for a well‐managed terminal illness leads to longer life as well as better symptom control and less distress. Second, we need to quickly and directly confront the cost of end of life care in the United State, recognize the political consequences, and work with the broad middle to advance the common good.
Medical Education as Mission: Why One Medical School Chose to Accept DREAMers
Authors: Kuczewski Mark G. , Brubaker Linda 
Published: October 2014

AbstractIn October 2012, the Loyola University Chicago Stritch School of Medicine amended its eligibility requirements for admission. In addition to U.S. citizens and permanent residents, persons who qualify for the Deferred Action for Childhood Arrivals program of the United States Citizenship and Immigration Service are now eligible for admission. Simply put, we extended the educational opportunity of medical school to people who are in a particular category of undocumented immigrants. We became the first medical school in the United States to have an intentional, transparent policy of eligibility for persons eligible for the DACA program. This expanded admissions policy has gained some attention in the popular press and brought us many expressions of support. It has also dismayed a few members of our school's circle of faculty and alumni.We wish to walk you through the history of our policy's development. We believe that viewing it as it developed will make clear three pertinent ideas: this policy flows directly from the mission of medical schools, it suits a positive notion of social justice and is also compelled by a duty not to discriminate on arbitrary grounds, and educators who steward educational institutions must have the moral courage to place considerations of institutional mission and social justice above the political views and negative responses of some alumni and donors.
Narrative Ethics:A Narrative
Authors: Brody Howard , Clark Mark 
Published: October 2014

AbstractOnce upon a time, medicine dismissed narrative as unimportant and uninteresting. Then, in the late 1980s, physicians and scholars became interested in how the study of narrative could enhance our understanding of illness and health care, and the field that came to be known as “narrative medicine” developed. Some of this scholarly activity focused on the idea of narrative ethics.After a flurry of activity around the turn of the twenty‐first century, narrative ethics seemed to stall. The general interest in narrative in medicine continued but with few new ideas on how one might use narrative toward ethical ends. In the last few years, however, forward momentum has returned. The timing seems appropriate, therefore, for a “state of the field” report of sorts.
When Stories Go Wrong
Authors: Lindemann Hilde 
Published: October 2014

AbstractStories do many different kinds of moral work. Because they can depict time passing, feature certain details while downplaying others, draw connections among their internal elements, display causal relationships, and connect themselves to other stories, they are particularly well suited to the task of modeling a puzzling clinical situation. A story maps the situation's contours, picking out the details that, together, constitute the moral reasons for doing what may or must be done. When moral deliberators construct a story, they come to understand the situation in a certain way, and that, in turn, guides their sense of how they should act in or with respect to it.But stories don't just represent situations‐they can also misrepresent them. For that reason, if we are to use stories as guides to action, we have to be sure we get them right. In what follows I offer three clinical situations that are either about to be or have already been narratively misrepresented. I'll explain how the stories go wrong, point out the undesirable consequences of acting on them, and offer alternative ways of depicting the situations that could bring them to a morally successful resolution.
Narrative Awareness in Ethics Consultations:The Ethics Consultant as Story‐Maker
Authors: Churchill Larry 
Published: October 2014

AbstractMuch has been written about the importance of narrative in teaching ethics and humanities to medical students and residents, as well as the value of narratives in clinical care. Relatively little has been said about the essential role of narrative in bioethics consultations. For most consults, the interpretation of narratives is the central moral feature, and the ethics consultant is inevitably one of the narrators. In a recent consult in which I participated, at least three narratives were in play. The medical record itself was a narrative, or really, a variety of narratives. A second distinct narrative was the story of why this case had come to be categorized as an ethical concern for the medical team. A third narrative was the tentative sketch running through my mind as a consultant‐partly factual, partly anticipatory and conjectural, inevitably personal‐about what was going on here.
The Ethics of Anonymous Gamete Donation:Is There a Right to Know One's Genetic Origins?
Authors: Melo‐Martín Inmaculada De 
Published: October 2014

AbstractThe vast majority of gamete donations worldwide are made anonymously, and in some countries, including Spain, France, and Denmark, the anonymity of donors is explicitly protected by law. Nonetheless, a growing number of countries have called into question the morality of such practices and are enacting laws allowing children access to identifying information about their gamete donor. A significant reason for the growing legislative support for nonanonymous gamete donations is the belief that donor‐conceived children have a fundamental moral right to know their genetic origins and that the right should be legally protected. A variety of factors, such as the increasing number of children born by means of gamete donation, advances in genetic science and technology that make it easy to discover the identity of a person's genetic parents, and the widespread belief that genetic information is important for protecting people's health, have made this alleged right quite salient, even leading some to challenge the ethical appropriateness of gamete donation practices altogether. Often, however, this right is assumed rather than explicitly justified. The purpose of this paper is to call into question the ethical justifications that are often thought to ground a right to know one's genetic origins.Proponents of a right to know this information usually argue that such a right protects at least three vital interests: the interest of donor‐conceived people in having strong family relationships, their health interests, and their interest in forming a healthy identity. These different interests might be protected by different aspects of the right to know one's genetic origins: knowing one's mode of conception, accessing medically relevant information, and accessing identifying information about one's genetic parents. I will discuss each of these interests and explore whether and how they might be set back by an individual's lack of access to information about his or her genetic parentage. I will also evaluate whether donor anonymity policies are, as many of their opponents argue, morally impermissible because they fail to protect these important interests.
Physician Assistance in Dying: A Subtler Slippery Slope
Authors: Duffy Thomas P. 
Published: October 2014

AbstractShortly after discharge, my patient's husband called to inform me that his wife had died suddenly the previous evening. The call was not a surprise. I felt she had silently communicated to me that she was taking matters into her own hands, and the quantity of narcotics I prescribed was enough to be lethal if ingested as a single dose. I was aware that this was a possible and perhaps even likely outcome. I could have limited the drug amount, but this would have required that she return frequently to the clinic. I believed that such restrictions were an affront to her dignity and her autonomy. And she could always stockpile her drugs to achieve the same purpose.In the midst of the ongoing contretemps surrounding the legality of physician‐assisted death, there is a grey zone of physician complicity. My action in providing my patient with a potentially lethal quantity of narcotics certainly marks me as an assistant, albeit at a remove, in her suicide.
Functional Neuroimaging: Technical, Logical, and Social Perspectives
Authors: Aguirre Geoffrey K. 
Published: October 2014

AbstractNeuroscientists have long sought to study the dynamic activity of the human brain—what's happening in the brain, that is, while people are thinking, feeling, and acting. Ideally, an inside look at brain function would simultaneously and continuously measure the biochemical state of every cell in the central nervous system. While such a miraculous method is science fiction, a century of progress in neuroimaging technologies has made such simultaneous and continuous measurement a plausible fiction. Despite this progress, practitioners of modern neuroimaging struggle with two kinds of limitations: those that attend the particular neuroimaging methods we have today and those that would limit any method of imaging neural activity, no matter how powerful.In this essay, I consider the liabilities and potential of techniques that measure human brain activity. I am concerned here only with methods that measure relevant physiologic states of the central nervous system and relate those measures to particular mental states. I will consider in particular the preeminent method of functional neuroimaging: BOLD fMRI. While there are several practical limits on the biological information that current technologies can measure, these limits—as important as they are—are minor in comparison to the fundamental logical restraints on the conclusions that can be drawn from brain imaging studies.
Seeing Responsibility:Can Neuroimaging Teach Us Anything about Moral and Legal Responsibility?
Authors: Wasserman David , Johnston Josephine 
Published: October 2014

AbstractAs imaging technologies help us understand the structure and function of the brain, providing insight into human capabilities as basic as vision and as complex as memory, and human conditions as impairing as depression and as fraught as psychopathy, some have asked whether they can also help us understand human agency. Specifically, could neuroimaging lead us to reassess the socially significant practice of assigning and taking responsibility?While responsibility itself is not a psychological process open to investigation through neuroimaging, decision‐making is. Over the past decade, different researchers and scholars have sought to use neuroimaging (or the results of neuroimaging studies) to investigate what is going on in the brain when we make decisions. The results of this research raise the question whether neuroscience—especially now that it includes neuroimaging—can and should alter our understandings of responsibility and our related practice of holding people responsible. It is this question that we investigate here.
Living with the Ancient Puzzle
Authors: Parens Erik 
Published: October 2014

AbstractWe began this special report by suggesting that neuroimaging technologies are tools that can, when used carefully and in conjunction with the other tools of neuroscience and psychology, help illuminate the capacities and behaviors that constitute our minds. In the course of this special report we have called attention to some basic points that are worth remembering as we encounter more and more claims about human psychology that are based on evidence from imaging technologies like fMRI.
How Should We Model Rare Disease Allocation Decisions?
Authors: JOHN LONDON ALEX 
Published: October 2014

AbstractWhen health budgets are insufficient to provide care for all, allocating resources to treat a person with a rare and expensive disorder entails that we cannot treat at least one person with a more common, less expensive disorder. Since any allocation scheme will entail such trade‐offs, how should prudent policy‐makers, concerned about justice and fairness, allocate their community's health resources? In their article in this issue of the Hastings Center Report, Emily Largent and Steven Pearson frame this problem as a conflict between the “rule of rescue” and utilitarian allocation schemes that try to maximize the benefits produced by a given budget. In his article, Norman Daniels discusses the related problem of the “identified victim bias.” I doubt that the problem of crafting an equitable health policy regarding orphan diseases maps onto either of these factors in a way that sheds light on the key moral issues.