bluuebunny/crossref_metadata_2025_split huggingface dataset:
Testing Children for Genetic Predispositions: Is it in Their Best Interest?
Authors: Hoffmann Diane E. , Wulfsberg Eric A. 
Published: June 2007

Researchers summoned a Baltimore County woman to an office at the Johns Hopkins School of Public Health last spring to tell her the bad news. They had found a genetic threat lurking in her 7-year-old son's DNA—a mutant gene that almost always triggers a rare form of colon cancer. It was the same illness that led surgeons to remove her colon in 1979. While the boy, Michael, now 8, is still perfectly healthy, without surgery he is almost certain to develop cancer by age 40.This genetic fortune-telling was no parlor trick. It was the product of astonishing advances in recent decades in understanding how genes build and regulate our bodies. And as scientists pinpoint new genes and learn to forecast the onset of more inherited disorders, millions of people are likely to demand their medical prognosis.
Tax-Exempt Status and Integrated Delivery Systems
Authors: Choi Lisa C. 
Published: June 2007

Within the health care industry, the move from regulatory cost controls to market competition has generated rapid and dramatic restructuring of providers. To enhance their competitive positions in the evolving market, many health care organizations are pursuing the ownership and integration of all elements and stages of health care delivery and payment, with the goal of increasing access to capital and lowering costs through administrative efficiencies and economies of scale. As of July 1994, 24 percent of hospitals were members of an integrated delivery system (IDS), and 47 percent were involved in IDS development.IDSs pose a singular challenge to the Internal Revenue Service (IRS). The IRS recognizes that its traditional policies for granting tax exempt status are not flexible enough for the competitive and rapidly changing health care market. In recent years, the IRS has taken a more active role in scrutinizing emerging health care institutions seeking taxexempt status.
Research Bioethics in the Ugandan Context: A Program Summary
Authors: Loue Sana , Okello David , Kawuma Medi 
Published: June 2007

Researchers, scientists, and physicians in Uganda have become increasingly aware of the need to develop a systematic approach to reviewing bio-medical research conducted in their country. Much of this awareness and their concern stems from Uganda's high seroprevalence of human immunodeficiency virus (HIV) and the consequent large influx of research monies and HIV researchers from developed countries, including the United States and Great Britain.We report on the proceedings of a five-day symposium on bioethical principles governing clinical trials, which convened in Jinja, Uganda in September 1994. The thirteen male and female workshop participants included representatives from the Uganda Ministry of Health, Makerere University, the Uganda AIDS Commission, Uganda's National Council of Science and Technology, and the National Chemotherapeutic Laboratory. These representatives included ethicists, physicians, researchers, and pharmacists, all of whom have conducted research themselves. Initial workshop sessions focused on the history of human experimentation and the development of protections for human participants in medical research, both in the United States and internationally.
Physician-Assisted Suicide as a Constitutional Right
Authors: Linville John E. 
Published: June 2007

The legal treatment of physician-assisted suicide (PAS) is in flux. Reform has been impelled by several forces, including the recent success of novel constitutional arguments in the Ninth and Second Circuit Courts of Appeals. I will review and discussCompassion in Dying v. State of WashingtonandQuill v. Vacco, addressing the constitutional arguments, and then briefly considering the attractions and difficulties of these new constitutional theories.Before 1990, state criminal laws dealing with assisted suicide had reached a remarkably stable consensus: suicide was not illegal, but assisting suicide was a criminal action with no distinction typically made between physicians and others who assisted. The details of the relevant criminal law varied from state to state. Some states had criminal statutes specifically addressing assisted suicide, while others treated the practice under more general homicide statutes. But in no state was it clearly legal for a physician to prescribe a lethal medication at the request of a dying patient. While remarkable legal developments took place during the 1970s and 1980s regarding other aspects of the rights of dying patients (including the right to refuse resuscitation and other life-sustaining treatments and the right to withdraw from life-sustaining treatment including nutrition and hydration), there was relative quiescence regarding the law of PAS.
Can Physician-Assisted Suicide Be Regulated Effectively?
Authors: Miller Franklin G. , Brody Howard , Quill Timothy E. 
Published: June 2007

With breathtalung speed, traditional criminal prohibitions against assisted suicide have been declaredunconstitutional in twelve states, including California and New York. This poses great promise and great peril. The promise is that competent terminally ill patients, as a compassionate measure of last resort, will have the option of putting an end to their suffering by physician-assisted suicide (PAS). Moresigmficant, legally permittingthis controversial option may be a catalyst for doctors, health care institutions, and society to improve the care of the dying. PAS should be limited only to those relatively few competent patients who continue to suffer intolerably despite unrestrained efforts to palliate and who face a continued existence that they regard as worse than death. When dying patients know they will not be abandoned to miserable and pointless suffering if palliative care fails, they will be fortified to cope better with the process of dying.The immediate peril is that PAS will become a quick fix, available on demand to any patient diagnosed as terminally ill, thus bypassing palliative care and producing premature deaths.
Narratives on Pain and Comfort
Authors: Purtilo Ruth B. 
Published: June 2007

Pain management has no meaning without the stories of men and women, and boys and girls whose lives are dramatically altered by the presence of pain in their own and their loved ones lives. In this narrative section, four people present their perspectives on the enigma and challenge of pain, its power, and our on-going efforts to limit its hold on our lives.In the first story, Dr. Robert McQuillan, an anesthesiologist with Creighton University School of Medicine, conveys the fear some patients suffering chronic pain face when seeking pain medication over the long term. Dr. Christine Cassel, chair of the Department of Geriatrics and Adult Development at Mount Sinai Medical Center and immediate past president of the American College of Physicians, recounts the plight of a fellow physician whose pain treatment of a patient led to suspension of his professional license and to personal bitterness after many years of exemplary medical practice.
Narratives on Pain and Comfort: Dr. M's Story
Authors: Cassel Christine K. 
Published: June 2007

Dr. M is a fifty-nine-year-old internist with a successful practice in a major Eastern United States city. He has lived in this city his whole life and is a highly esteemed citizen. Because of his broader social concerns and energetic support of activities to improve access to health care and quality of care for the underserved, Dr. M became involved in a number of local and regional medical organizations and quickly rose to prominence as as a director of a board of a major national organization. In this position, he was an effective, articulate spokesperson, highly respected for his integrity and thoughtfulness.Before one of the meetings of thithis s board, Dr. M personally contacted the organization's other directors, including me, to warn us that we might be hearing some scandalous news about him. He wanted us first to hear it from him personally. This was the scandalous news.Dr. M had assumed the care of a patient of a recently retired colleague. The patient was an older woman with multiple musculoskeletal complaints related to lumbar stenosis and advanced degenerative arthritis of the spine, which left her in immense pain.
Pain Management and Disciplinary Action: How Medical Boards Can Remove Barriers to Effective Treatment
Authors: Hyman Chris Stern 
Published: June 2007

The current debate about physician-assisted suicide and the question of whether patients would ask for such help if their pain were adequately controlled place in sharp focus the issue of undertreated pain. Studies have repeatedly documented the scope of the problem. A 1993 study of 897 physicians caring for cancer patients found that 86 percent of the physicians reported that most patients with cancer are undermedicated for their pain. A 1994 study found that noncancer patients receive even less adequate pain treatment than patients with cancer-related pain, and that minority patients, the elderly, and women were more likely than others to receive inadequate pain treatment. Although the problem of undertreatment of pain is multifaceted, I only address how state medical boards contribute to the problem and suggest possible remedies.The literature on palliative care describes the numerous barriers that impede effective pain management and that result in the inadequate prescribing of pain-relieving drugs for terminally and chronically ill patients.
Pain: Ethics, Culture, and Informed Consent to Relief
Authors: Post Linda Farber , Blustein Jeffrey , Gordon Elysa , Dubler Nancy Neveloff 
Published: June 2007

As medical technology becomes more sophisticate the ability to manipulate nature and manage disease forces the dilemma of whencanbecomesought. Indeed, most bioethical discourse is framed in terms of balancing the values and interestsandthe benefits and burdens that inform principled decisions about how, when, and whether interventions should occur. Yet, despite advances in science and technology, onecaregiver mandateremains as constant and compelling as it was for the earliest shaman—the relief of pain. Even when cure is impossible, the physician's duty of care includes palliation. Moreover, the centrality of this obligation is both unquestioned and universal, transcending time and cultural boundaries.Although universally acknowledged, pain is a complex phenomenon for both the patient and the caregiver, influenced as much by personal values and cultural traditions as by physiological injury and disease.
Legal and Ethical Commentary: The Dangers of Reading Duty Too Broadly
Authors: Clayton Ellen Wright 
Published: June 2007

The term duty is used in philosophy and law to de scribe the obligation one person owes to another. Yet what these two disciplines mean by duty often differs. Perhaps even more important, a determination by the law that a duty exists has different social consequences than does a similar assessment by philosophy Moral or ethical obligations between individuals make living in society possible, but breach of these obligations usually results only in social opprobrium, personal guilt, or shame. A legal duty, by contrast, enables a person to use the power of the state to enforce claims against another, either by injunction to make the duty-ower fulfill his/her responsibilities or more commonly by award of damages in the event the duty-ower fails to meet these obligations. In some cases, society itself chooses to impose criminal penalties on those who fail to meet certain important obligations.The use of the term duty in both disciplines creates the temptation to extend a definition formulated in one setting to the other discourse. Ronald Green does not bite this apple, but his efforts to draw on the law to support his moral arguments, while not clearly identifying the distinctions between legal and moral obligations, may make it easier for others to see moral and legal duties as the same. Yielding to the enticement to equate moral and legal duties can lead to a host of difficulties. My purpose here is to demonstrate why the duties and privileges proposed by Professor Green are not and should not be adopted and enforced by the law.
Professional Self-Regulation and Shared-Risk Programs for In Vitro Fertilization
Authors: Robertson John A. , Schneyer Theodore J. 
Published: June 2007

In vitro fertilization (IVF) is now a well-established practice in the field of assisted reproduction. In 1995, over 41,000 IVF cycles were done in the United States, at a cost of more than $300 million. The overall success rate has risen to 22.8 deliveries per 100 egg-retrieval procedures (19.6 deliveries per initiated cycle). As the field has matured, the attention of policy-makers has shifted from questions about the ethical and legal status of human embryos to concerns about providing access and protecting consumers.Three such concerns have emerged. One is the danger that IVF programs will disseminate misleading information about their success rates in order to attract patients. This problem, however, may be alleviated by the publication in late 1997 of the first of annual national and clinic specific reports, based on randomly audited data, by the Centers for Disease Control and Prevention, the American Society of Reproductive Medicine (ASRM), the Society for Assisted Reproductive Technology (SART), and RESOLVE, pursuant to the federal 1992 Fertility Clinic Success Rate and Laboratory Certification Act.
Serious Illness and Private Health Coverage: A Unique Problem Calling for Unique Solutions
Authors: Kinney Eleanor D. , Freund Deborah A. , Camp Mary Elizabeth , Jordan Karen A. , Mayfield Marion Christopher 
Published: June 2007

Having a serious illness like breast cancer is a calamity for individuals and families. Along with the pain, discomfort, and dislocation comes the issue of how to pay the medical expenses for the care and treatment of the disease. If the seriously ill person has inadequate or no insurance, these problems are aggravated.Stories abound about seriously ill people losing private health insurance following diagnosis with a catastrophic disease, remaining in jobs just to maintain health insurance, or facing financial hardship because of gaps in coverage. Yet surprisingly little research has focused on the problems that people with serious illness face with health coverage and, in particular, how concerns about access to health insurance coverage shape their lives.Further, despite profoundly moving anecdotes of cancer victims and other seriously ill people about their problems with health insurance and despite recent federal and state efforts to reform the private health insurance market in ways discussed below, neither the federal government, states, nor the private sector has crafted comprehensive strategies to enhance health coverage for the seriously ill.
Reconsidering Genetic Antidiscrimination Legislation
Authors: Beckwith Jon , Alper Joseph S. 
Published: June 2007

Until approximately twenty years ago, advances in the study of human genetics had little influence on the practice of medicine. In the 1980s, this changed dramatically with the mapping of the altered genes that cause cystic fibrosis (CF) and Huntington disease (HD). In just a few years, these discoveries led to DNA-based tests that enabled clinicians to determine whether prospective parents were carriers of CF or whether an individual carried the Huntington gene and, as a result, would almost certainly develop the disease.Observers interested in the social and economic implications of genetic technology realized that such genetic tests could be used by insurance companies to predict which insurance applicants were likely to become ill or even die from these diseases.
Oocyte Cytoplasm Transfers and the Ethics of Germ-Line Intervention
Authors: Robertson John A. 
Published: June 2007

The February 1997 announcement of the birth of Dolly, the sheep cloned from a mammary cell of an adult ewe, has drawn attention to the growing ability to select, alter, or otherwise manipulate the genome of offspring. Prior to Dolly, ethical discussion of genes in reproduction had focused on negative selection: carrier screening, prenatal diagnosis, and abortion or embryo discard. After Dolly, ethical debate will have to consider the direct or positive use of genetic selection or alteration technology.The principal use of genetic selection techniques in human reproduction (reprogenetics) likely will be to treat or prevent disease in offspring. In the future, however, such techniques might also be used to enhance or even diminish expected characteristics of progeny. Techniques to accomplish these goals are likely to include: selection of the nuclear genome, as occurs in somatic cell cloning; chromosomal transplants; or direct insertion or deletion of specific genes.
Private Health Care for Canada: North of the Border, an Idea Whose Time Shouldn't Come?
Authors: Schrecker Ted 
Published: June 2007

Toronto physician Brian Goldman had thought about “joining the camp that favours private health care for Canada.” Writing in theCanadian Medical Association Journal,he tells us that he changed his mind after one of his cats experienced a series of illnesses and misadventures that resulted in a Can$3,101 medical bill. “I’m just glad,” he says, “that the cost of health care never entered my deliberations.”’Canadian citizens and permanent residents are similarly free from most worries about the direct costs of their own medical care, and have been for more than a generation. This reflects a fundamental difference between the Canadian and United States contexts for health policy. Since the failure of President Clinton's first-term efforts to provide something approximating universal health insurance, reforms to the existing regime of providing and financing health care in the United States have been incremental, and primarily responsive to the changing nature of the health care marketplace. In Canada, universal publicly funded first-dollar coverage for most physicians’ and hospitals’ services has been a reality since the early 1970s.
Pain Management and Palliative Care in the Era of Managed Care: Issues for Health Insurers
Authors: Hoffmann Diane E. 
Published: June 2007

The problem of inadequate pain management for both terminally ill patients and patients with chronic pain has recently been documented by a number of authors and studies. A 1997 report by the Institute of Medicine (IOM), for example, states that “a significant proportion of dying patients and patients with advanced disease experience serious pain, despite the availability of effective pharmacological and other options for relieving most pain.” There are particularly impressive data that pain associated with cancer is not adequately treated.The problem has been attributed to (1) inadequate education of physicians on approaches to pain management and an often misguided belief that prolonged therapy with certain pain medication will lead to addiction; (2) legal obstacles, such as physicians’ fear of criminal prosecution and other disciplinary actions by state licensing boards for overprescribing narcotics; and (3) inadequate insurance coverage as a result of narrow eligibility criteria for hospice care for Medicare beneficiaries, and inadequate reimbursement more generally for pain management and palliative care.
Public Financing of Pain Management: Leaky Umbrellas and Ragged Safety Nets
Authors: Jost Timothy S. 
Published: June 2007

The United States, unlike all other industrialized nations, does not have a comprehensive public system for financing health care. Nevertheless, the magnitude of America's public health care financing effort is remarkable. Of the one trillion dollars the United States spent on health care in 1996, almost half, $483.1 billion, was spent by public programs. In 1995, Medicare—our social insurance program for persons over sixty-five and the long-term disabled—overed 37.5 million Americans; Medicaid—our program for indigent elderly and disabled persons and indigent children and their families—covered 36.3 million. In 1996, Medicare and Medicaid spent $203.1 and $147.7 billion, respectively. The payment policies of these massive public health care programs have a profound effect on the provision of health care.Many of the recipients of Medicare and Medicaid suffer pain. In 1994, 376,200 Americans over age sixty-five died of cancer. Virtually all of these would have been Medicare recipients, and as many as 70 percent of them died in unrelieved pain. Nearly four million Americans over sixty-five endured the pain of inpatient surgery in 1995, again nearly all of whom were Medicare recipients.
The Doctor-Proxy Relationship: Perception and Communication
Authors: Zeleznik Jomarie , Post Linda Farber , Mulvihill Michael , Jacobs Laurie G. , Burton William B. , Dubler Nancy Neveloff 
Published: June 2007

Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who should make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life.
The Legal and Functional Status of the Medical Proxy: Suggestions for Statutory Reform
Authors: Sabatino Charles P. 
Published: June 2007

Medical technology, specialization, and the corporatization of health delivery systems in the late twentieth century have all helped give birth to an unwelcome but unavoidable responsibility for individuals with family or friends—serving as a health care proxy. The responsibility comes without monetary compensation, is often involuntary, and lacks any real guidelines beyond the duty to make life-and-death decisions in circumstances over which the proxy has little control.The parameters of the proxy's job have evolved somewhat awkwardly in statutes and case law, as lawmakers and judges have tried to apply conventional concepts to novel circumstances. This article examines the legal and functional status of the proxy, as well as the strengths and weaknesses of current public policy as reflected by state advance directive and surrogate decision-making laws. The first section of the article provides a historical perspective of our current notions of agency law as relevant to health care proxies.