bluuebunny/crossref_metadata_2025_split huggingface dataset:
Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations
Authors: Annas George J. , Glantz Leonard H. , Roche Patricia A. 
Published: June 2007

Only 27 percent of Americans in a 1995 Harris poll said they had read or heard “quite a lot” about genetic tests. Nonetheless, 68 percent said they would be either “very likely” or “somewhat likely” to undergo genetic testing even for diseases “for which there is presently no cure or treatment.” Perhaps most astonishing, 56 percent found it either “very” or “somewhat acceptable” to develop a government computerized DNA bank with samples taken from all newborns, and their names attached to the samples. This does not necessarily mean the public is unconcerned about genetic privacy. More likely it means that the public is still uninformed about the risks associated with genetic testing, and has not thought at all about the risks involved in storing identifiable DNA samples.A central question presented by genetic screening and testing is whether the genetic information so obtained is different in kind from other medical information (such as family history and cholesterol levels), and, if so, whether this means that it should receive special legal protection.
The Dangers of Directives or the False Security of Forms
Authors: Hoffmann Diane E. , Zimmerman Sheryl Itkin , Tompkins Catherine J. 
Published: June 2007

During the past several years, numerous studies have been conducted regarding advance directives (that is, living wills and durable powers of attorney (DPAs) for health care). Studies have examined how many individuals have executed advance directives, who is more likely to execute such directives, and whether factors such as education, income, race, religiosity, or family status affect the likelihood of having executed an advance directive or one's willingness to do so. Studies have also investigated the effectiveness of different educational strategies aimed at increasing the number of individuals who execute these documents. Finally, a number of researchers have looked at the implementation of advance directives (that is, whether they are followed in the institutional setting).Although we now have a better understanding of some of these issues, one area that has been virtually ignored is the reliability, validity, and overall user friendliness of the advance directive forms themselves, and, in particular, of the statutory advance directive forms.
Placebo Orthodoxy in Clinical Research II: Ethical, Legal, and Regulatory Myths
Authors: Freedman Benjamin , Glass Kathleen Cranley , Weijer Charles 
Published: June 2007

Placebo-controlled trials are held by many, including regulators at agencies like the United States Food and Drug Administration (FDA), to be the gold standard in the assessment of new medical interventions. Yet the use of placebo controls in clinical trials has been the focus of considerable controversy. In this two-part article, we challenge a number of common beliefs concerning the value of placebo controls. Part I critiques statistical and other scientific justifications for the use of placebo controls in clinical research. The continued use of placebo controls in clinical trials on diseases for which accepted treatment exists raises equally important ethical, legal, and regulatory issues for which various justifications have been given. Defense of this practice relies on normative as well as empirical myths.In their attack on the prevailing use of placebo controls, Kenneth Rothman and Karin Michels emphasize that this practice stands in violation of the World Medical Association's guidelines on the ethics of human experimentation, most commonly known as the Helsinki Declaration.
Falsification of Credentials in the Research Setting; Scientific Misconduct?
Authors: Parrish Debra M. 
Published: June 2007

The debate about the definition ofscientific miscon ductis being revisited by the scientific community in response to the Commission on Research Integrity's (CRI) recommendation for a new definition. Scientists and lawyers are debating whether scientific misconduct should include acts that are not unique to the scientific community and do not affect the research. Falsification of credentials is one form of such misconduct.The Office of Research Integrity (ORI) and the National Science Foundation (NSF), the two federal agencies primarily responsible for developing policies onscientific misconduct, have struggled to define scientific rnisconduct and to decide which forms of professional misconduct do and do not fall within the definition. Although falsification of credentials is not unique to the scientific community, OR1 and NSF have determined that when researchers lie about their credentials, such conduct may constitute scientific misconduct. The question is why this form of professional misconduct has been labeled scientific misconduct when it occurs in a research setting, and whether any distinction exists between this white coat crime and white collar crime.
Controlled Substances and Pain Management: Regulatory Oversight, Formularies, and Cost Decisions
Authors: Pisano Douglas J. 
Published: June 2007

Pharmacists, physicians, and other health care personnel practice within an integrated system of laws and regulations that influence many treatment modalities. Capitation, managed care, and other controls strain these relationships by mandating greater oversight of how health care is delivered. From a pharmacists’s perspective, any use of medication requites knowledge of three omnipresent factors: regulatory control, formularies (product selection), and economic decision making. My objective is to raise awareness of these issues as they relate to the prescription of pain medication and to pain management generally.All practice-oriented drug law and regulation is based on the federal Controlled Substances Act of 1970. The Act, also known as Title II, is part of a much larger piece of legislation, the Comprehensive Drug Abuse Prevention and Control Act of 1970 (CSA). CSA was enacted to regulate the manufacturing, distribution, dispensing, and delivery of drugs or substances that are subject to, or have the potential for, abuse or physical or psychological dependence.
Disciplinary Actions and Pain Relief: Analysis of the Pain Relief Act
Authors: Johnson Sandra H. 
Published: June 2007

The problem is pain. Patients and their families tell the story:He is your son. You love him. You want to help him in every way you can, but when he is in that kind of pain, you are helpless in a sense. Im his daddy. It was-what was I supposed to do for him? I felt, you know, helpless.It terrifies you. You want to run away from it. Pain is something you wish would kill you but does not. Agony results from the pain that does not have the decency to knock you out.[W]e had a good family, but how much can you watch? How much suffering can you watch from your child, your 7-year-old child, and still keep your mind?I am a forty-six-year-old registered nurse who specializes in oncology care and education. I am also a patient who suffers from chronic nonmalignant pain, and this malady has been the most frightening, the most humiliating, and the most difficult ordeal of my life .
Clinical Commentary: The Law of Unintended Ethics
Authors: Biesecker Leslie G. 
Published: June 2007

The law of unintended consequences is generally applied to technological advances that solve one problem but cause another. In this view, the problem created may be worse than that which was solved, hence the law is used as an argument against technological advances. Concern about intent and consequence comes to mind when reading the article by Ronald Green on parental decision making and prenatal genetics. Green's analysis, combined with the realities of genetic practice, raises questions about parental power, eugenics, and the interests of children affected by genetic or congenital disorders. Green proposes rules and draws conclusions that are not useful for clinicians and that promise harm to families and individuals affected by genetic disorders. Green's analysis may be an example of a corollary that could be viewed as the Law of Unintended Ethics.Green's paper begins with an apparently contradictory dual thesis. First, he supports unfettered parental decision making about their fetuses and children. Second, he suggests that we should strive to give our children lives unimpaired by serious genetic (or congenital) disorders.
Creutzfeldt-Jakob Disease: The Problem of Recipient Notification
Authors: DuVal Gordon 
Published: June 2007

In the past twelve to eighteen months, another perceived threat to the safety of America's blood supply has arisen. The fear is that Creutzfeldt-Jakob disease (CJD) will join hepatitis, HW and AIDS in the public and medical consciousness as the 1990s next infectious disease epidemic. A particular kind of ethical dilemma has arisen causing much debate and consternation for hospitals, regulators, and blood suppliers, and has elicited a remarkably varied response.CJD is a rare but uniformly fatal neurological disease: it affects the brain and the rest of the central nervous system. Its incidence in the population of the developed world is about one per million per year, although some geographic anomalies exist. CJD manifests itself in two broad ways. First, the disease is associated with symptoms of mental deterioration and dementia, including memory loss, anxiety, and cognitive impairment. Second, CJD is also associated with a range of neurological symptoms, including muscle rigidity, seizures, tremors, muscle twitching, and spasticity, as well as problems with muscle coordination and unsteady gait, sometimes resulting in total disability.
Money-Back Guarantees for IVF: An Ethical Critique
Authors: Murray Thomas H. 
Published: June 2007

When infertility clinics offer money-back guarantees, they prefer to give them more delicate names such as “shared risk,” “warranty,” or “outcome” programs. We should not allow such daintiness to distract us from the bottom line of these programs which are all about the bottom line.John Robertson and Theodore Schneyer defend such programs as special forms of insurance, what they call “risk-of-failure insurance.” They argue, in “Professional Self-Regulation and Shared-Risk Programs for In Vitro Fertilization,” that the criticisms of in vitro fertilization (IVF) shared-risk programs by the American Medical Association (AMA) and others are off the mark. It would be sufficient, Robertson and Schneyer contend, to develop guidelines for informed consent or protocols that discourage risky clinical procedures. They acknowledge that shared risk plans “present problems if not offered with full disclosure and attention to patient interests,” but they insist that “there is no reason why they cannot be implemented in an ethically sound way.”
Medical Record Confidentiality and Data Collection: Current Dilemmas
Authors: Woodward Beverly 
Published: June 2007

All scientific activity involves some method of observation and some method of recording what is observed. These activities can be carried out in ways that involve little interaction between subject and object, as is the case when a telescope observes a far-away star. At the other end of the scale are experiments in modern high energy physics in which there is little distinction between the observer and the observed, and the process of observation materially affects the data that are recorded. In this regard, research on human phenomena resembles modern physics more than it does classical astronomy.Research on human phenomena, however, differs from modern physics in the way in which it affects that which is observed. Both the procedures and the findings of research on human phenomena alter the modes of thinking and the self-awareness of the (human) objects of study.
Institutional Efforts to Promote Advance Care Planning in Nursing Homes: Challenges and Opportunities
Authors: Bradley Elizabeth H. , Blechner Barbara B. , Walker Leslie C. , Wetle Terrie T. 
Published: June 2007

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals (10 to 25 percent) have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use of advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act (PSDA) became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments.
Clinical Commentary: The Challenges of Genetic Medicine to the Patient-Physician Relationship
Authors: Pauker Susan P. 
Published: June 2007

The interface between genetic research results and clinical practice occurs when patients present them- selves to physicians. When patients ask their doctors about the potential impact of a family disease on themselves, their children, and their grandchildren, physicians have an opportunity to be helpful. Unfortunately, the scientific discoveries are occurring faster than most physicians can read about them in their speciality journals and hence adjust their practice. Meanwhile, the press and media are proclaiming the latest scientific breakthroughs, creating a preventive and curative expectation that physicians cannot fulfill.In this time of health system reorganization and consolidation, many people do not know who their primary caregiver is, no less which insurer is likely to cover which visit or genetic test.
Charitable Hospital Accountability: A Review and Analysis of Legal and Policy Initiatives
Authors: Noble Alice A. , Hyams Andrew L. , Kane Nancy M. 
Published: June 2007

Hospitals long ago shed their role as alms houses for the poor. What vestiges remain of the early American hospital are the tax-exempt, nonprofit hospital form and a general perception that hospitals, as charitable institutions, owe a duty to their communities. The appropriateness of the nonprofit hospital tax exemption has long been debated, and many theories have been advanced to justify the tax exemption of nonprofit hospitals. In a growing number of jurisdictions, however, state and local authorities have gone beyond the theoretical debate and are challenging the tax exemption of their nonprofit hospitals. For various reasons, efforts are afoot to capture greater community benefit from nonprofit hospitals.At the heart of such challenges is the debate over the nature and extent of the duty charitable institutions owe to their communities. A demand is growing for nonprofit hospitals to earn their tax exemptions by benefiting their communities in concrete ways. Some have been stripped of their tax-exempt status by local authorities or pressured to make payments in lieu of taxes. A number of states have recently implemented initiatives in an attempt to make hospitals more accountable for their community benefits. Many hospitals are responding to this heightened scrutiny in a proactive way, by voluntarily documenting community benefits. A number of nonprofit hospitals and hospital associations are cooperating with—or even sponsoring—state legislation in this area.
Bioethics and the Whole: Pluralism, Consensus, and the Transmutation of Bioethical Methods into Gold
Authors: Martin Patricia A. 
Published: June 2007

In 1785, George Washington described a “knowing farmer” as “one who can convert every thing he touches into manure,as the first transmutation towards Gold.”With these words, Washington linked the “knowing farmer” to the alchemist who endeavored to transform base metals into gold with the aid of a philosopher's stone. In each instance, the challenge was to convert raw materials into something new and precious.Today, the “knowing bioethicist” is in a similar position. American bioethics harbors a variety of ethical methods that emphasize different ethical factors, including principles, circumstances, character, interpersonal needs, and personal meaning. Each method reflects an important aspect of ethical experience, adds to the others, and enriches the ethical imagination.
Are We Prepared for Tomorrow’s Health Challenges?
Authors: Monson Angela Z. , Hardy George E. , Thompson Ed 
Published: June 2007

Thank you so much for the invitation to be here with you. It is always a pleasure to be with people who understand, believe in, and know the importance of public health. Those of us who work in the legislative arena know how infrequent it is to have dialogue and conversation with people who really have a good, tangible, hands-on working knowledge of health care, and particularly of public health.The notion of public health is an interesting one. It will range—if you talk to people in the legislature or out of the legislature—from just complete ignorance to total unawareness of what we mean by the words “public health.” When you talk to individuals like us in this room, we find a mixture of definitions, a mixture of understandings, and a mixture of appreciation as to what public health really is.
Should Your State Have a Public Health Law Center?
Authors: Moore Jill , Ashe Marice , Gray Patricia , Blanke Doug 
Published: June 2007

The Tobacco Control Legal Consortium is a national “network” designed to tap expertise about tobacco control legislation and to leverage existing resources. Based at the William Mitchell College of Law in St. Paul, Minnesota, the Consortium supports local counsel with research, strategic advice, sample materials and pleadings, and amicus briefs. The Consortium’s priorities are to support capacity nationally, to offer education, and to perform outreach activities to a variety of audiences.The Consortium seeks to advance policy change by making legal expertise more readily available to the tobacco control community. Legal issues are inevitably involved in policy change. The Consortium does not provide legal representation, but conducts analysis and research. They publish on important and emerging legal issues as well as on specific cases, assist in the development of legislation, and train public health practitioners and policy makers on recurring legal issues.
Using Science-Based Guidelines to Shape Public Health Law
Authors: Zaza Stephanie , Clymer John , Upmeyer Linda , Thacker Stephen B. 
Published: June 2007

Compared to evidence-based public health, evidence-based medicine is a more familiar phrase. Evidence-based medicine has become increasingly popular in the past decade, due in large part to the emergence of computerized database search technology and advanced statistical tools which allow researchers to quickly identify and summarize vast amounts of scientific information.Today, the concept of evidence-based public health is gaining momentum and has grown in popularity. However, the term “evidence-based” lacks clarification and is subject to a variety of interpretations. The evidence that supports evidence-based medicine or public health may include individual experience, anecdotal information, the content of a single scientific article, or the results of a sophisticated systematic review of scientific literature. The imprecise language used to describe evidence leads to confusion over what types of evidence are most appropriate in answering different types of questions.
The HIPAA Privacy Rule: Reviewing the Post-Compliance Impact on Public Health Practice and Research
Authors: Kutkat Lora , Hodge James G. , Jeffry Thomas , Bontá Diana M. 
Published: June 2007

Current economic conditions have coincided with the implementation of the Health Insurance Portability and Accountability Act (HIPAA) and forced public health officials to consider how to ethically incorporate compliance into their already strained budgets, while maintaining the integrity and intent of the legislation.As of April 14, 2003, the HIPAA Privacy Rule provides a new federal floor of protections for personal health information. The Privacy Rule establishes standards for the protection of health information held by many physicians’ offices, health plans, and health care clearinghouses. The Rule protects personal health information by establishing conditions regulating the use and disclosure of individually identifiable health information by these entities, also referred to as covered entities. The Rule does not prevent the daily operations of health care establishments (i.e., the treatment of patients and the collection of payment).
The Role of Non-Governmental Organizations (NGOs) in Public Health Law
Authors: Ruhl Suzi , Stephens Mari , Locke Paul 
Published: June 2007

NGOs can play an important role in the development, implementation, and reform of public health laws. To be effective, NGOs must recognize the critical role law plays in protecting the health of the public and in the public health system’s emergency preparedness. They must be ready to work with federal, state, and local leaders to advance the goals that public health laws were enacted to achieve. NGOs also have technical expertise, which they can utilize to help translate highly complex scientific concepts into public health action steps that regulators, legislators, and members of the public can readily understand.Those who are most often affected by pollution tend to be low income people, the working class, Native Americans, and people of color. Those most affected by pollution issues, however, usually have the least input in the creation of policy.
The Impact of Maternal Depression on Young Children
Authors: Pound Andrea , Puckering Christine , And Tony Cox , Mills Maggie 
Published: June 2007

ABSTRACTDepression in mothers of young children is a common condition, and is highly associated with disturbance in the children and with later reading delay. A group of depressed and control women with children aged two and three was interviewed and observed at home and the children assessed. The depressed women had more difficult backgrounds and more current adversity than the controls. They played and talked as much with their children, but the quality of interaction was less satisfactory, with poorer‘meshing’, more distress and more unresolved conflict. Social policy and service implications are discussed.
New Ideas About the Unconscious Family Structure
Authors: Berenstein Isidoro 
Published: June 2007

SUMMARY. Unconscious Family Structure (UFS) is the virtual, symbolic space, the deep level level where lies the meaning which organises the family relations or the manifest level. Within the UFS space there are subspaces: that of the marital couple, later to become the parents, that of the children in relation to the parents, that of the children in relation to each other. Within these subspaces certain places are to be found: the father's place, the mother's place and the child's place. Between the spaces lie the relationships or links: the couple or marital link; the filial link between parents and their children; the consanguineous link between siblings. To these I add a fourth: the avunculus link with the representative of the mother's family.I depict a series of verbal or preverbal stipulations: the unconscious accords, pacts and rules.In addition I describe four UFS configurations: grade a (‘normal’), b (‘neurotic’), c‘perverse’) and d (‘psychotic’).I conclude with some observations about family transference and countertransference.