In lieu of an abstract, here is a brief excerpt of the content:Public Health Ethics: Health by the NumbersMartina Darragh (bio) and Pat Milmoe McCarrick (bio)Hippocrates had nothing to say about public health. Rather, the idea that a government should protect its citizens from disease by maintaining sanitary conditions has its origin in Renaissance humanities texts, and the notion that physicians have public health responsibilities emerged in the works of such Enlightenment authors as Johann Peter Frank, Benjamin Rush, (...) and John Gregory (II, Coughlin and Beauchamp 1996). When the spread of infectious diseases such as typhoid and cholera accompanied the growth of the Industrial Revolution, England was the first to respond by passing the Public Health Act of 1848. The motivation for this reform was not based in humanitarian concerns but in the realization that unsanitary conditions were costly to industry. “... [The] founders of the public health movement were guided by nineteenth century utilitarian moral theories... the greatest good for the greatest number... accompanied by a growing appreciation for the innate value and dignity of mankind... however, the rights and autonomy of individuals have not always been respected in pursuing these important objectives” (I, Coughlin 1995, p. 1).Public health projects have dramatically improved global health status. One measure of their success is that “... most poor people now live longer, on average, than the wealthiest people a century ago” (I, Beaglehole and Bonita 1997, p. 13) These projects are not limited to such activities as disinfecting sewers. “Public health is what we, as a society, do to collectively assure the conditions in which people can be healthy. This requires that continuing and emerging threats to the health of the public be successfully countered. These threats include immediate crises, such as the AIDS epidemic; enduring problems, such as injuries and chronic illness; and impending crises foreshadowed by such developments as the toxic by-products of a modern economy” (I, Institute of Medicine (IOM) 1988, p. 1) The practice of public health has embraced this IOM challenge and includes the subspecialties of epidemiology, health promotion and education, public health administration, international health, maternal and child health, biostatistics, environmental health, and nutrition. This annotated bibliography focuses on epidemiology, [End Page 339] health promotion and education, and public health administration, and includes a wide variety of opinions on each topic.EpidemiologyAt first glance, it is hard to see what ethical issues could arise in population studies of the causes and control of illness. Disclosure of risk information in the clinical encounter is complicated by issues of uncertainty with regard to the data itself. Causation and causal inference may be affected by “wish bias,” leading to studies that use the same data but reach widely varying conclusions (II, Weed 1997). Given the complexity of the statistical calculations used to validate public health recommendations, and mass media’s portrayal of them, the public may be unintentionally deceived by population-based recommendations (V, Seedhouse 1997; II, Lupton 1995). With the addition of genetic screening, another layer of statistical complexity is added to this mix (VI, Stone and Steward 1996).Health Promotion and EducationIncreased life expectancy brought about by advances in public health has raised a new set of problems. With the realization that illness can be promoted in part by individual life-style choices, population-based recommendations about risk factors become important in the clinical encounter. This shift is not without difficulties; one author notes that he has yet to receive any risk information from his physicians, even when he asks “the experts” (V, Dugdale 1998). This may be due in part to the fact that “... public health lacks a vocabulary with which to speak about and identify commonalities among health problems experienced by very different populations” (IV, Mann 1997, p. 8). Furthermore, the mix of disciplines informing health promotion activities (sociology, psychology, recreation medicine, and the like) creates an illusion of shared ethics where none exists, which in turn leads to programs based on value systems that may not be meaningful for the populations they serve (V, Seedhouse 1997).Given these factors, a number of authors are skeptical of introducing public health measures into the clinical encounter. “We might do well to encourage people to live lives of modified hedonism so that they might... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managed Health Care: New Ethical Issues for All*Martina Darragh (bio) and Pat Milmoe McCarrick (bio)Changes in the way that health care is perceived, delivered, and financed have occurred rapidly in a relatively short time span. The 50-year period since World War II encompasses enormous growth in medical technology, soaring health care costs, and significant fragmentation of the two-party patient- physician relationship. This relationship first grew to include (...) the third-party payer, the health insurance industry, and now “with great speed and relatively little public awareness, a significant change has occurred in the way some decisions are made about a patient’s medical care” (III, Institute of Medicine 1989).The new means of providing health care bring an increasing number of parties into clinical decision-making processes. With this change, ethical issues that once concerned only health care professionals, the physician or the nurse, have expanded to include the patient and the groups who “manage” care—e.g., health maintenance organizations (HMOs), preferred provider organizations (PPOs), point of service groups (POSs), independent practice associations (IPAs), insurance reviewers, hospital administrators, institutional managers, and, the most recent players, purchasers of group health care who base their decisions on competitive pricing.The term “managed care” refers to a variety of continually adapting and developing arrangements that involve four groups. These groups, which have been labeled by the world of business, not health, are the “consumer” (once the patient), the “provider” (the physician and other health care professionals), the “insurer” (the reimburser for any care), and the “purchaser of care” or the primary buyer of health services (the large employer organization). Capitation is a common way to pay for health services in managed care systems. A certain dollar amount is negotiated for health services for a specified number of patients whether the care is delivered or not; the provider shares with the [End Page 189] insurer any financial risk for the actual cost of care (III, Centers for Disease Control 1995).When the Clinton administration’s health care reform movement failed to gain support in the U.S. Congress, the use of managed care to control rising health care costs accelerated. The literature on managed care and its effect on the patient-physician relationship reflects this shift. During the era of health care reform, “debate centered on how managed care could control costs, on the use of technology and patient satisfaction, [and] on access and barriers to care” (IV, Emanuel and Dubler 1995). When managed care organizations began contracting with physicians to provide health care services subject to the plans’ provisions, these plans became agents in clinical decision making on a wide-spread basis. HMO enrollment grew to 51 million persons by 1994 (III, Centers for Disease Control 1995). This “corporatization” of health care has sparked a plethora of articles about the effects of the marketplace on the physician’s ability to do what is best for the patient, and on the patient’s ability to trust the physician to do so.Many authors make it clear that managed care itself is not the problem, but rather the development of for-profit managed care plans by “corporate conglomerates with billions of dollars in assets that compensate their executives as grandly as basketball players” (V, Kassirer 1995) “in a marketplace that is largely unregulated” (I, Zoloth-Dorfman and Rubin 1995). “Some, mostly older plans that were created when cost containment was an unexpected benefit rather than their central purpose, deliver high-quality care economically. Unfortunately, others cut costs by recruiting the healthiest patients, excluding the sickest, rationing care by making it inconvenient to obtain, and denying care by a variety of mechanisms” (V, Kassirer 1995).These cost-containment features now play an intimate role in clinical practice. When a managed care plan contracts with a physician, the doctor becomes a “double agent” with contractual obligations to the plan to provide a preset amount of services and professional responsibilities to each patient to authorize necessary treatment (V, Angell 1993). This duality can undermine the physician’s fiduciary responsibility to the patient wherein the physician “has power over the affairs of [the patient]...and is required by law to act on that person’s... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Genetic Testing and Genetic ScreeningPat Milmoe McCarrick (bio)In recent years there has been an enormous expansion in the knowledge that may be gleaned from the testing of an individual's genetic material to predict present or future disability or disease either for oneself or one's offspring. The Human Genome Project, which is currently mapping the entire human gene system, is identifying progressively more genetic sequencing information (see Scope (...) Note 17, The Human Genome Project). Information obtained from genetic testing raises ethical and legal questions about its uses by society. The ethical dilemmas were foreseen two decades ago by bioethicists who asked whether questionable applications could stop "legitimate pursuits" (IV, Gaylin 1972) and whether genetic disease might come to be viewed as "transmissible" in the sense of being contagious (IV, Veatch 1974).Not only has knowledge expanded, but the practice of genetic testing and screening has greatly increased as well. For example, in the case of testing for cystic fibrosis (CF), the U.S. Congress' Office of Technology Assessment (OTA) estimates that instances of screening jumped from 9310 tests in 1991 to 63,000 tests in 1992 (I, OTA [Cystic Fibrosis] 1992). In addition, the OTA estimates that within the next few years, the six million women who become pregnant each year routinely will be informed of available CF carrier tests (I, OTA [Cystic Fibrosis] 1992).Following the recent identification of a gene linked to breast cancer, Dr. Francis Sellers Collins, director of the National Center for Human Genome Research, said that "it is not inconceivable that every woman in America may want to be screened for this gene. The economic, ethical, and counseling issues will be very daunting." Dr. Collins opines that in the near future physical examinations for 18-year-olds will include DNA testing for diseases with genetic components and that physicians, in the interests of preventive medicine, will make risk-based recommendations for a healthy life-style (IV, Breo 1993). The U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research predicted as early as 1983 that before the end of the century genetic screening and counseling would become major components of both public health and individual medical care (I, U.S. President's Commission 1983). [End Page 333]The OTA defines genetic testing as "the use of specific assays to determine the genetic status of individuals already suspected to be at high risk for a particular inherited condition. The terms genetic test, genetic assay, and genetic analysis are used interchangeably to mean the actual laboratory examination of samples." In contrast, genetic screening usually uses the same assays employed for genetic testing but is distinguished from genetic testing by its target population (I, OTA [Genetic Monitoring] 1990). The National Academy of Sciences (NAS) defines screening as the systematic search of populations for persons with latent, early, or asymptomatic disease (III, NAS 1975). Some of the literature annotated for this Scope Note appears to use the terms "testing" and "screening" interchangeably.Philip Boyle of the Hastings Center points out that the language used to describe genetic variation is important and asks what words should be used: "Defects, flaws, deleterious genes, disorders, or the more neutral conditions? Using words such as normal—and its corollary, abnormal—is likely to foster stigmatization and discrimination" (III, Genetic Grammar, Boyle 1992).Areas of focus in genetic testing include: prenatal diagnosis, newborn screening, carrier screening, forensic screening, and susceptibility screening.Prenatal diagnosis discerns whether a fetus is at risk for various identifiable genetic diseases or traits. Prenatal diagnosis is made using amniotic fluid, fetal cells, and fetal or maternal blood cells obtained during amniocentesis testing; alpha fetoprotein assays or chorionic villus sampling; or ultrasound tomography, which creates fetal images on a screen. Another method, known as fetoscopy, uses a camera on a needle inserted in the uterus to view the fetus. Since prenatal screening began in 1966 (I, U.S. President's Commission 1983), the number of metabolic defects and genetic disorders that can be diagnosed prenatally has expanded greatly. There is also discussion of requiring testing for parents who are participating in an in vitro fertilization program and are at genetic... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Active Euthanasia and Assisted SuicidePat Milmoe McCarrick (bio)Although the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research in its 1983 report, Deciding to Forego Life-Sustaining Treatment, described the words and terms "euthanasia," "right to die," and "death with dignity" as slogans or code words—"empty rhetoric," (I, p. 24), the literature reviewed for this Scope Note continues to use these terms. (...) Therefore, to discuss the termination of a patient's life by a physician at the patient's request, the phrase active euthanasia is used, and the supplying of a means by a physician whereby a patient can end his or her life is referred to as assisted suicide.Euthanasia, either as the "good death" from classical Greek or "mercy killing" to end unbearable suffering in the dying, has long been a topic of interest in western civilization (III, Brody 1989). In recent years, public awareness of this discussion about control over the time of one's death has been informed by a series of well-publicized events. They include the November 1991 rejection by a vote of 54 percent to 46 percent of the Washington state Initiative 119, which would have allowed the option of requesting one's physician to "aid-in-dying" for adult patients in a "medically terminal condition" (V, Gross 1991); two medical journal articles describing physician's actions in helping bring death to two patients (V, Anonymous 1988; V, Quill 1991); Dr. Jack Kevorkian's assistance in the suicide of three women (V, Belkin 1990; V, Wilkerson 1991); and the best seller status of a how-to book on committing suicide with opiates obtained from a physician (III, Humphry 1991).For the most part, material included in the annotated bibliography in Scope Note 18 has been chosen from works published in the four years since "It's Over, Debbie" (V, Anonymous 1988) appeared in early January 1988 in the Journal of the American Medical Association.Dr. Edmund D. Pellegrino (V, 1991, pp. 3118-19) presented opposing views about active voluntary euthanasia as follows:Those who favor voluntary euthanasia argue that it is a beneficent and compassionate act; it respects autonomy by preserving the patient's control of the manner, method, [End Page 79] and timing of death; it takes the matter outside the reach of "medical power" (accessed in this Scope Note's bibliography at V, Fletcher 1973; V, Nowell-Smith 1989) and scrupulosity; and it prevents the injustice that allows some patients to choose death by refusal of life-support measures, while denying others the right to do so by active euthanasia....The opponents of active euthanasia argue that it undermines the value of, and respect for, all human life (V, Kass 1989; V, Coyle 1990; V, Singer 1990). They fear that guidelines cannot avoid sliding down the "slippery slope" to involuntary euthanasia and selective devaluation of the lives of the most vulnerable among us.... If euthanasia is legal, it is predicted that patients will feel subtle pressure to conform so as to relieve the economic and emotional burdens they impose on family and friends.Euthanasia, its opponents further argue, is socially destructive: it undermines trust in physicians, desensitizes society to killing, and imperils the ground already gained in legitimating passive euthanasia(IV, Wolf 1989).Physicians were not particularly involved with a patient's death until after World War II when participation grew in proportion to the growth of technology. Since the complex, life-sustaining equipment that could forestall death was located in a hospital, death itself became almost completely medicalized (V, Dagi 1991). For terminally ill persons who would like to die a painless death, either by their own hand or with assistance, physicians have almost a monopoly on obtaining strong drugs for distribution to patients (V, Abrams 1990).Active euthanasia for human beings is not legalized anywhere in the world (V, VonDrehle 1991). It is classified as homicide or murder in all fifty states and in Great Britain, Canada, Australia, and the Phillippines (V, Nerland 1989). Twentysix states in the United States prohibit assisted suicide by statute (V, Rosenblum 1990).In 1969 in the Netherlands, a physician named Jan Hendrik van... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Feminist Perspectives on Bioethics*Pat Milmoe McCarrick (bio) and Martina Darragh (bio)The literature of feminist bioethics has flourished in the last decade. Women’s health care, women’s role both as patient and health care professional, the many new reproductive technologies, the exclusion of women as research subjects, as well as the broader topic of feminist contributions to ethical theory itself, have all become topics of interest for feminist bioethical (...) writers.Although feminism is anything but a monolithic enterprise, Karen Lebacqz’ essay on feminism in the new, revised Encyclopedia of Bioethics (II A, 1995) says that “all feminists agree that women are oppressed and this oppression is wrong.” Rosemarie Tong refines this statement to include variations of feminism: “... feminist theory is not one, but many theories or perspectives and... each feminist theory or perspective attempts to describe women’s oppression, to explain its causes and consequences, and to prescribe strategies for women’s liberation” (VII, Tong 1989). She describes different feminist views in Feminine and Feminist Ethics (II A, 1993), labelling them liberal, Marxist, radical, psychoanalytic, socialist, existentialist, and postmodern. Alison Jaggar critiques these different forms of feminism in Feminist Politics and Human Nature, and Susan Sherwin applies these perspectives to the field of bioethics in No Longer Patient: Feminist Ethics and Health Care.One of the central activities in current feminist bioethics is a revisitation of ethical theory itself. There is a distinction between “feminine” and “feminist” ethics in this field (II A, Tong 1993). “A feminine approach to ethics consists of observations of how the traditional approaches to ethics fail to fit the moral experiences and intuitions of women. In contrast, a feminist approach to ethics applies a specifically political perspective and offers suggestions of how ethics must be revised if it is to get at the patterns of dominance and oppression as they affect women” (IV, Sherwin 1992). Carol Gilligan’s two books, In a Different Voice and Mapping the Moral Domain, Nel Noddings’s Caring: A Feminine Approach to Ethics and Moral Education, and Virginia Held’s Feminist Morality: [End Page 85] Transforming Culture, Society, and Politics can be thought of as feminine critiques of contemporary ethics.Gilligan’s notion of the “ethics of care” has served as a point of departure for a discussion of a type of relational ethics that focuses on concrete experiences, pairs emotions with reason, and balances justice with care. This “ethics of care” has been both celebrated and criticized. The concept of “care” in ethics dates back to the “cura” tradition of care in ancient Rome and was further developed by philosophers Soren Kierkegaard and Martin Heidegger and psychologists Rollo May and Erik Erikson. Nursing theorists have built on this tradition both in theory and in practice (II A, Reich, Care, Encyclopedia of Bioethics, 1995). “Care” often is discussed in opposition to the liberal notion of “justice” (III, Sterba, Justice, Encyclopedia of Bioethics, 1995).Gilligan’s theory was developed to provide a counter model to Lawrence Kohlberg’s six steps in the development of a human moral nature: (1) acting to avoid punishment, (2) acting to promote reciprocity, (3) conforming to get approbation, (4) respecting authority to maintain social order, (5) acting freely if others are not harmed, and (6) following self-legislated, self-imposed, universal principles of justice, reciprocity, and respect for the dignity of humans as individuals. In contrast, Gilligan holds that the moral self is an individual working with other individuals to identify mutually agreeable solutions to thorny human relations problems. Gilligan called Kohlberg’s the male moral point of view as an ethics of justice and hers the female moral view as an ethics of care. Her levels are (1) inward-directed care, (2) other-directed care subjugating personal wants and needs to others (eventually leading to anger), (3) a philosophy of care that balances egoism and altruism, recognizing the women’s connection to others and theirs to her.According to Jocelyn Downie and Susan Sherwin (IV, 1993), oppression, as used by feminists, is understood as an interlocking series of restrictions and barriers that reduce the options available to members of a group defined by morally insignificant characteristics, here gender. The literature itself can be... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Just Share: Justice and Fairness in Resource Allocation*Pat Milmoe Mccarrick (bio) and Martina Darragh (bio)Each of us has some basic sense of what the words “fair” or “just” or “fairness” or “justice” mean. Each of us probably also has an idea of what is “fair” in health care. The attempt by the state of Oregon in the mid-1980s to quantify this notion made a previously private (...) exercise a public one. This transition has been chronicled in the bioethics literature that focuses on resource allocation. These works examine both theories of justice and concepts of “health”; the fair distribution of health resources has been of continuing interest since the beginning of bioethics in the 1960s. Early writing on justice includes authors Tom L. Beauchamp, Robert H. Blank, James F. Childress, H. Tristram Engelhardt, Paul T. Menzel, Paul Ramsey, and Robert M. Veatch (VII).During the 1980s, bioethicists such as Daniel Callahan and Norman Daniels proposed thinking of health care decisions not as moments of personal crisis but as choices that span a lifetime, possibly involving tradeoffs in other areas of one’s life, e.g., education. The Oregon experience added another dimension to the discussion. The initial rank-ordering of health services by cost produced a skewed list—for example, surgery for life-threatening conditions ranked below minor, elective procedures. For the project to make sense, the ranking algorithm could not be based on cost alone, but rather on a combination of costs and benefits both to individuals and to the community—“concatenations of individual and group goods” (I, Jecker and Jonsen 1995). Various metaphors have been used in the literature to facilitate discussion of this shift from individual to individual/community trade-offs: medical services as a “commons” (I, Asch 1995, Jecker and Jonsen 1995, Michels 1994); resource allocation as a “lifeboat” (I, Campbell 1995; III, Kaveny 1994); medical care as “shares” in a community health (III, Nelson 1992, Ford and Kissick 1995; II, Anderson 1993); and rationing as traveling through the desert with one jug of water for two people (a story from the Halachah literature) (I, Zoloth-Dorfman 1995). [End Page 81]Such metaphors do not promote any one “theory of justice” but rather draw from the work of a number of bioethicists as well as from theological, sociological, economic, and business literature. The five major conceptions of justice that are referenced most frequently are: “(1) a libertarian conception, which takes liberty to be the ultimate political ideal; (2) a socialist conception, which takes equality to be the ultimate political ideal; (3) a welfare liberal conception, which takes contractual fairness or maximal utility to be the ultimate political ideal; (4) a communitarian conception, which takes the common good to be the ultimate political ideal; and (5) a feminist conception, which takes a gender-free society to be the ultimate political ideal” (I, Sterba 1995).The use of new metaphors also draws on expanded concepts of “health.” “As health care is currently practiced, the most powerful symbols for public and professional alike are those that promise the defeat of time” (I, Campbell 1995). When medical care is perceived as an unrelated series of individual cures, the fact that health care resources are finite cannot be addressed.Reflections concerning the difficulties in limiting the use of health care resources have an ancient lineage and reveal a tight bond with the obsession to postpone death at all costs. Plato in Book 3 of the Republic recognizes the quandary of infinite expectations and finite resources that characterizes the challenge of health care choices. (I, Engelhardt 1996)The proliferation of expensive medical technologies and the loss of autonomy by health care professionals further complicates perceptions of the crucial issues at hand. Some have said that Americans place too much emphasis on individualism to address these issues. Daniels et al. believe that this is too pessimistic a view and that the American commitment to protecting equal opportunity for all provides a firm basis for developing a public consensus on what is fair in health care (III, Daniels, Light, and Caplan 1996). Finally, several authors suggest that the nature of all four principles of medical ethics, not justice alone, must be... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bioethics ConsultationPat Milmoe McCarrick (bio)(John La Puma, M.D., from the Department of Medicine at Lutheran General Hospital in Chicago, contacted the National Reference Center for Bioethics Literature and suggested bioethics consultation as a topic for the Scope Note Series. He provided an extensive list of citations about ethics consultations collected by him and by David Schiedermayer, M.D., for their new book Ethics Consultation: A Practical Guide.)In Ethics (...) Consultation in Health Care, editors John Fletcher, Norman Quist, and Albert R. Jonsen (I, 1989) define ethics consultation as "the provision of specialized help in identifying, analyzing, and resolving ethical problems that arise in clinical care. In medical ethics the area of consultation has grown rapidly since 1978 when Edmund D. Pellegrino (II, 1978) noted, "we cannot separate technical-moral decisions from the philosophic principles we use to justify them. Medicine and ethics must be engaged with each other at every level."In 1980 Albert Jonsen raised the question of whether an ethicist could be a consultant and said that the ethicist as consultant is a casuist, one whose moral reasoning is based on a system of reasoning that is applied to particular cases. He describes historical casuistry in Western culture, comparing it to modern moral philosophy, and suggests that a "new casuistry seems timely" for ethics consultation (II, Jonsen 1980). By 1984 ethicist Ruth Purtilo recorded her thoughts following an ethics consultation. She raised questions about the ethicist's place on a hospital staff and how to make that role appropriate and beneficial to all concerned, saying that "the ethicist retreats after the consultation; under no circumstances would the outcome of an ethics consultation be that the ethicist became the primary care giver or assumed ongoing responsibility for the clinical management of a case" (II, Purtilo 1984). Nevertheless, in 1992 two physician-ethicists who had been called as ethics consultants for a patient who had requested that he be removed from his ventilator reported that they became the persons who turned off the ventilator and administered the drugs that eased his dying (II, Edwards and Tolle 1992).In recognition of the growing number of persons identifying themselves as [End Page 433] consultants, the Society for Bioethics Consultation was founded in October 1985 as a professional society of persons engaged in bioethics consultation. It encourages and supports consultation, assists in establishing clinical education programs, and raises funds for consultation education. Although the Society has no permanent office, the president (currently, George Kanoti in the Cleveland Clinic Foundation's Bioethics Department) conducts its work and plans an annual meeting.The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) established new criteria concerning ethics in its 1992 Manual (III, JCAHO 1992) and in a special issue of QRB devoted to ethics consultation (I, Defining Quality 1992). These publications undoubtedly have contributed to the increased use of experts in medical ethics. The Manual notes that all organizations seeking accreditation should have some sort of "mechanism for the consideration of ethical issues arising in the care of patients and to provide education to care givers and patients on ethical issues in health care." A health care institution's eligibility for JCAHO accreditation, which is required for federal reimbursement, requires adherence to this specification (III, JCAHO 1992).The new International Directory of Bioethics Organizations provides an index of 129 different groups that indicated to the authors that they offer bioethics consultations. Of these, 83 are in the United States and 46 are in other countries. The ethics consultants included in the directory encompass a broad group of professionals who will assist patients, families, and primary care medical staff in finding solutions to ethical dilemmas resulting from use of new technologies or new treatments in health care. Consultants often come from the health fields: physicians, nurses, and other health personnel, but other professionals are also active as ethics consultants. Lawyers, pastoral counselors, philosophers, and social workers also offer bioethics consultation services (III, Nolen and Coutts 1993).Drs. Siegler, Pellegrino, and Singer wrote in 1990 that "Physician-ethicists and professional ethicists will continue to work side by side in the future. One is not likely to replace the other, nor is this desirable, because... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics Committees in HospitalsPat Milmoe McCarrick (bio)(Literature about hospital ethics committees has grown enormously since Scope Note 3 first appeared. This update provides new information about resources and documents now available while continuing to include important earlier sources.)Hospital ethics committees increasingly have taken hold in the United States since 1983, when the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (...) encouraged their creation in its report, Deciding to Forego Life-Sustaining Treatment (III, 1983, p. 5).The President's Commission report (pp. 160-64) suggested the following roles for ethics committees: 1) review of treatment decisions made on behalf of incompetent, terminally ill patients; 2) review of medical decisions having ethical implications with the option, in cases of disagreement, to refer cases to a court with proper jurisdiction; 3) provision of social, psychological, spiritual, or other counseling for patients, family members, physicians, or other hospital staff; 4) establishing guidelines regarding treatment or other medical decisions; and 5) sponsoring or conducting educational programs to inform all concerned, including the public, about ethical problems in medicine.No exact count of these committees is available. According to estimates cited by Donald F. Phillips, managing editor of Hospital Ethics, about two-thirds to three-fourths of hospitals with more than 200 beds have ethics committees, as do about one-third of hospitals under 200 beds. He thinks that about half of the 6,000 hospitals in the United States now have working ethics committees.Several journal articles and a court decision in the late 1970s influenced their formation. A 1975 journal article by pediatrician Karen Teel (VII A) urged the use of hospital ethics committees to provide for dialogue in individual care situations as an appropriate sharing of responsibility. Another early article suggested that beyond parents and treating physicians, a "disinterested," mixed lay and medical committee could consider cases about defective newborns to improve the ethical decisionmaking process (VII A, Robertson and Fost, 1976). Three 1977 discussions in the Hastings Center Report highlighted this new concept (VII A, Levine; Shannon; Veatch).Produced at the National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University, Washington, DC 20057. It is supported by funds provided under grant number LM04492 from the National Library of Medicine, National Institutes of Health. Literature available through June 1992 is represented in this Scope Note. [End Page 285]The court decision was the March 31, 1976 ruling by the New Jersey Supreme Court in the Karen Quinlan case. The parents of a young woman in a persistent vegetative state had requested that she be taken off a respirator. The court designated a "prognosis" role for the hospital ethics committee and stipulated that the committee must concur that the patient will never return to a "cognitive, sapient state" before the life-support system can be withdrawn (In the Matter of Karen Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976)). Shortly after the Quinlan decision, Massachusetts General Hospital's Clinical Care Committee created an ad hoc subcommittee (a psychiatrist, a legal counsel, an ICU nurse, an oncologist/internist, a surgeon, and a lay person who had recovered from serious cancer disease) which looked at 15 cases. Based on the subcommittee's success, establishment of a permanent committee to review treatment of the terminally ill was recommended by the critical care committee (VII A, Clinical Care Committee 1976).In its 1984 Baby Doe rules, the federal government recommended establishment of infant care review committees, which promoted the growth of hospital ethics committees (VII C, Povar 1991). In July 1987 Maryland became the first state to require by law that hospitals establish patient care advisory committees to offer advice about choices available in the care of life-threatening illnesses; this requirement was extended to nursing homes in 1990 [codified as amended at Md. Health-Gen. Code Ann. Sections 19-370 to -374 (1990)] (VII C, Hollinger 1991).Recently the role for these committees has been noted in the Accreditation Manual for Hospitals, 1992 Supplement (p. 10, Patient Rights, Section RI. 1.1.6.1) of the Joint Commission... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 13.1 (2003) 53-64 [Access article in PDF] Incentives for Providing Organs Patricia Milmoe McCarrick and Martina Darragh After a contentious debate at its 2002 annual meeting, the American Medical Association's House of Delegates voted to endorse the opinion of its Council on Ethical and Judicial Affairs that the impact of financial incentives on organ donation should be studied (Josefson 2002). The shortage (...) of organs for transplantation has been an ongoing problem for more than 20 years. In June1981, Representative Philip Crane (R-IL) introduced legislation in the U.S. House of Representatives proposing a $25,000 income tax deduction and a $25,000 estate tax exclusion for donating an organ (Tax Incentives 1981). Still the National Organ Transplant Act enacted in October 1984 prohibited the offering of any "valuable consideration" in return for organs (United States 1984).The developments of a legal market for tissues in the United States and a black market for organs around the world have raised the question of whether donation without compensation is the only ethically viable option. Some critics of the current system claim reliance on donation actually promotes a black market in organs (Kaserman and Barnett 2002, p. 38; Palmer 1999, p. 36). In addition, a new set of compensation issues has arisen as living kidney donor transplantations begin to rival those performed with cadaveric organs (United States 2001).As a result, current suggestions for incentives go far beyond the traditional death benefit payment to include such ideas as medals of honor for donors, reimbursement for funeral expenses, exchange programs for organ donation, and special medical insurance for living organ donors. Numerous bills introduced into the 107th Congress have proposed such incentives (Delmonico et al. 2002.) In October 2002, the U.S. Department of Health and Human Services awarded $5.2 million in grants to study both clinical and behavioral interventions for increasing organ donations that do not involve incentives. The inspiration for some of the funded proposals comes from the successes of Spain's social services and the United Kingdom's clinical administration of organ procurement programs (Robeznieks 2002). [End Page 53]With a nod to evidence-based medicine, the underlying concern expressed in much of the current literature is that no idea for increasing the supply of organs should be discounted before it is studied. This bibliography provides a short introduction to the range of opinions expressed on the issue of incentives for providing organs.al-Mousawi, M.; Samhan, M.; al-Mezairee I.; Razzak, M.A.; and Khawari, F. Cadaver Organ Procurement in Kuwait. Transplantation Proceedings 31 (8): 3375-76, 1999.The authors describe a protocol that significantly increased cadaveric organ donation and credit it with fostering the expansion of an organ sharing program among the Arab Gulf states. Developed by Kuwaiti neurologists and anesthetists after a continuing education course on transplantation, the protocol places a special emphasis on the role of local transplant coordinators who facilitate the investigation of brain death cases by neurologists.Arnold, Robert; Bartlett, Steven; Bernat, James; et al. [Ethics Committee of the American Society of Transplant Surgeons] Financial Incentives for Cadaver Organ Donation: an Ethical Reappraisal. Transplantation 73 (8): 1361-67, 27 April 2002.To prepare for proposed studies of financial incentives for organ donation, the American Society of Transplant Surgeons convened a panel to develop a methodology for evaluating the ethics of such research. Comprised of organ procurement organization executives, physicians, surgeons, and ethicists, the panel generated a list of nine criteria for use in judging any incentives proposal. While opposed to direct payment or tax incentives for organ donation, a majority of the members support funeral expense reimbursement or charitable contributions as incentives that would not violate or undermine the ideal of altruism.Cameron, J. Stewart, and Hoffenberg, Raymond. The Ethics of Organ Transplantation Reconsidered: Paid Organ Donation and the Use of Executed Prisoners as Donors. Kidney International 55 (2): 724-32, February 1999.After reviewing arguments for and against payment for organ procurement, the authors apply these arguments to the specific case of obtaining organs from executed... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Organ Transplant AllocationPat Milmoe McCarrick (bio)The introduction of the antibiotic, cyclosporin, which enhances the success rate of transplantation surgery, has resulted in the steady growth of organ transplantation since the mid-1980s. This growth increasingly focuses ethical interest on both the procurement and the allocation of human organs. Not everyone who might benefit from organ transplants can receive them since the number of patients in need of organs (...) far exceeds the number of organs available. Each year the waiting list for transplants increases by 20 percent, but the number of donated organs has remained stable for the past five years (Lawry 1994).Organ transplantation surgery performed on rock stars, sports heroes, politicians, and television celebrities brings questions about the fair allocation of scarce resources to the attention of everyone. Abigail Trafford, editor of Washington Post Health, wonders whether "new livers for hard livers" can be deserved when not enough organs are available for everyone who needs them. Writing about the dilemma of just allocation of organs, she calls famous recipients "poster patients" or "health care celebrities of medical catastrophe" (Trafford 1994). Personal responsibility—the viewpoint that "medical treatment should not be an entitlement program for profligate living"—is an emerging moral consideration according to Trafford. Deciding whose standards and values should apply to the allocation of organs raises many questions. Popular arguments for keeping the current criteria for allocation include: these patients are sick and therefore should be treated, regardless of the cause of their illness; former substance abusers should be able to benefit from their present abstention; physicians should treat anyone who is ill; and although many human illnesses may be caused by individual behavior, such behavior is not always used as a reason to deny care (Trafford 1995).Prior to 1984, when the government established regulations governing organ transplantation, organs routinely were given to the patients of the surgeons who excised them (Prottas 1994). In an effort to achieve a more equitable method of distribution, Congress passed the National Organ Transplant Act of 1984 (Pub. [End Page 365] L. No. 98-507, amended by Pub. L. No. 100607 and Pub. L. No. 101-616), which established a national Organ Procurement and Transplantation Network (OPTN) to improve the effectiveness of organ procurement, organ distribution, and transplant activities. The United Network for Organ Sharing (UNOS) received the federal government contract to be the OPTN.UNOS and its 66 regional organ procurement organizations (OPOs) around the nation have carried out the mandate since 1986. It requires hospitals that receive Medicare or Medicaid funds and perform transplants to belong to the network and to allocate organs according to network policies. UNOS maintains the national computer registry to match donor organs with individual recipients. In distributing organs, UNOS is required by law to use a fair and equitable system based on accepted medical criteria. UNOS regularly reevaluates its policies to ensure that organ donation and recipient selection meet criteria of efficiency and equity (UNOS Update 11 (8), 1995).At the end of June 1995, 278 transplant centers were in operation in the United States: almost all of them (247 centers) transplanted kidneys; 167 did hearts; 119, pancreases; 114, livers; 93, heart-lung; 88, lungs; 26, intestines; and only 19 centers performed pancreas islet cell transplants (UNOS Update 11 (8): 28, 1995). The number of patients waiting for organ transplants in July 1995 totalled 41,075: 29,274 were waiting for a kidney transplant; 4,937, liver; 3,298, heart; 1,816, lung; 1,223 kidney-pancreas; 240, pancreas; and 211, heart-lung (UNOS Update 11 (8): 40-41, 1995).OPOs are located in different geographic areas across the country, each with different organ needs, lengths of waiting lists, or with lists in areas with large older populations making it more difficult to find suitable donors. Black recipients often wait longer due to complex reasons including sensitization or rarer blood and antigen types (UNOS 11 (8): 31-32, 1995). When an organ becomes available, the OPO involved identifies a potential recipient from the UNOS list and offers it to the patient's surgeon. If no match can be made locally, the organ is next offered within a UNOS region, and finally, to... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Principles and Theory in BioethicsPat Milmoe McCarrick (bio)The following citations were selected from BIOETHICSLINE, the online database prepared at the Kennedy Institute of Ethics for the National Library of Medicine's MEDLARS system. Searching the keywords autonomy, beneficence, casuistry, justice, and virtues, as well as the text word principlism produced more than 400 citations. Only the citations concerned with theory and principle in the practice of bioethics are (...) included here—e.g., works about justice in resource allocation have been deleted.Arkes, Hadley V. When Bungling Practice Is Joined to Absurd Theory: Doctors, Philosophers, and the Right to Die. In Set No Limits: A Rebuttal to Daniel Callahan's Proposal to Limit Health Care for the Elderly, ed. Robert L. Barry and Gerard V. Bradley, pp. 31-44. Urbana: University of Illinois Press, 1991.Arnason, Vilhjalmur. Towards Authentic Conversations: Authenticity in the Patient-Professional Relationship. Theoretical Medicine 15 (3): 227-42, September 1994.Arras, John D. Getting Down to Cases: The Revival of Casuistry in Bioethics. Journal of Medicine and Philosophy 16 (1): 29-51, February 1991.Arras, John D. Principles and Particularity: The Role of Cases in Bioethics. Indiana Law Journal 69 (4): 983-1014, Fall 1994.Beauchamp, Tom L. Principles and Other Emerging Paradigms in Bioethics. Indiana Law Journal 69 (4): 955-71, Fall 1994.Beauchamp, Tom L. The Principles Approach. Hastings Center Report 23 (6): S9, November-December 1993.Beauchamp, Tom L., and Childress, [End Page 279] James F. Principles of Biomedical Ethics. 4th ed. New York: Oxford University Press, 1994. 752 p.Beauchamp, Tom L., and Walters, LeRoy. Ethical Theory and Bioethics. In their Contemporary Issues in Bioethics. 4th ed., pp. 1-38. Belmont, CA: Wadsworth, 1994.Beldecos, Athena, and Arnold, Robert M. Gathering Information and Casuistic Analysis. [Commentary]. Journal of Clinical Ethics 4 (3): 241-45, Fall 1993.Bole, Thomas J. The Rhetoric of Rights and Justice in Health Care. In Rights to Health Care, ed. Thomas J. Bole and William B. Bondeson, pp. 1-19. Boston: Kluwer Academic, 1991.Broome, John. Fairness Versus Doing the Most Good. [Commentary]. Hastings Center Report 24 (4): 36-39, July-August 1994.Campbell, Courtney S. Gifts and Caring Duties in Medicine. In Duties to Others, ed. Courtney S. Campbell and B. Andrew Lustig, pp. 181-97. Boston: Kluwer Academic, 1994.Carson, Ronald A.; Callahan, Sidney; Ross, Judith Wilson; and May, William F. Spirit, Emotion, and Meaning: The Many Voices of Bioethics. Hastings Center Report 24 (3): 26-27, May-June 1994.Charlesworth, Max. Bioethics in a Liberal Society. New York: Cambridge University Press, 1993. 172 p.Cherbas, Peter. Paradigms and Our Shrinking Bioethics. Indiana Law Journal 69 (4): 1105-13, Fall 1994.Childress, James F. Ethical Theories, Principles, and Casuistry in Bioethics: An Interpretation and Defense of Principlism. In Religious Methods and Resources in Bioethics, ed. Paul F. Camenisch, pp. 181-201. Boston: Kluwer Academic, 1994.Childress, James F., and Fletcher, John C. Individualism and Community: The Contested Terrain of Respect for Autonomy. Hastings Center Report 24 (3): 34-35, May-June 1994.Clouser, K. Danner, and Gert, Bernard. A Critique of Principlism. Journal of Medicine and Philosophy 15 (2): 219-36, April 1990.Devettere, Raymond J. Clinical Ethics and Happiness. Journal of Medicine and Philosophy 18 (1): 71-89, February 1993.DeGrazia, David. Moving Forward in Bioethical Theory: Theories, Cases, and Specified Principlism. Journal of Medicine and Philosophy 17 (5): 511-39, October 1992.Donnelly, William J. From Principles to Principals: The New Direction in Medical Ethics. [Commentary]. Theoretical Medicine 15 (2): 141-48, June 1994.Downie, Robin. Health Care Ethics and Casuistry. [Editorial]. Journal of Medical Ethics 18 (2): 61-62, 66, June 1992. [End Page 280]DuBose, Edwin R.; Hamel, Ronald P.; and O'Connell, Laurence J., eds. A Matter of Principles? Ferment in U.S. Bioethics. Valley Forge, PA: Trinity Press International, 1994. 381 p.Fox, Renée C. The Entry of U.S. Bioethics into the 1990s: A Sociological Analysis, pp. 21-71.Gudorf, Christine E. A Feminist Critique of Biomedical Principlism, pp.164-81.Campbell, Courtney S. Principlism and Religion: The Law and the Prophets, pp. 182-208.Charon, Rita. Narrative Contributions to Medical Ethics: Recognition, Formulation, Interpretation, and Validation... (shrink)

Although not legally established, the idea that every American has a right to some level of health care has gained wide acceptance. Support for this right has developed primarily in the 50 years since the end of World War II. No mention of health care can be found in either the Declaration of Independence or the Constitution; indeed, there was little anyone could to improve health care or health outcomes in colonial times. During the 19th and early 20th centuries a (...) government role in improving public health developed when certain services, such as clean water, or certain demands upon its citizens, such as quarantine for disease, were instituted in order to achieve better and safer conditions for the health of the general populace. (shrink)

A brief background essay is followed by an annotated bibliography of documents referring to differences between the treatment of women and men in the health care setting and the omission or underrepresentation of women in clinical research. Government reports, association statements, books and journal articles are included.

In lieu of an abstract, here is a brief excerpt of the content:EugenicsMary Carrington Coutts (bio) and Pat Milmoe McCarrick (bio)The word eugenics (from the Greek eugenes or well-born) was coined in 1883 by Francis Galton, an Englishman and cousin of Charles Darwin, who applied Darwinian science to develop theories about heredity and good or noble birth (I, Kevles 1985, p. x).The entry under "eugenics" in the Encyclopedia of Bioethics notes that the term has had different meanings in (...) different eras: "a science that investigates methods to ameliorate the genetic composition of the human race; a program to foster such betterment; a social movement; and in its perverted form, a pseudo-scientific retreat for bigots and racists" (V, Ludmerer 1978, p. 457). Kevles, who places a stronger emphasis than Ludmerer on the degeneration of eugenics, says that by 1935 it "had become 'hopelessly perverted' into a pseudoscientific facade for 'advocates of race and class prejudice, defenders of vested interests of church and state, Fascists, Hitlerites, and reactionaries generally'" (I, Kevles 1985, p. 164).Phrases such as "survival of the fittest" and "struggle for existence" came into use at the end of the nineteenth century when eugenics societies were created throughout the world to popularize genetic science. "Negative eugenics" utilized marriage restriction, sterilization, or custodial commitment of those thought to have unwanted characteristics. "Positive eugenics" tried to encourage the population perceived as "superior" to have more offspring (V, Ludmerer 1978, p. 459).In the United States, after World War I, new information, such as the importance of environmental influences and the more complex concept of multi-gene effects in inheritance, diminished the scientific justification for eugenics, but this knowledge did not decrease the pressure for legislation, judicial action, or immigration controls. The U.S. Immigration Restriction Act of 1924 favored immigration from northern Europe and greatly restricted the entry of persons from other areas referred to as "biologically inferior." Between 1907 and 1937, 32 [End Page 163] states required sterilization of various citizens viewed as undesirable: the mentally ill or handicapped; those convicted of sexual, drug, or alcohol crimes; and others viewed as "degenerate" (V, Larson 1991).In Germany, interest in eugenics flourished after the turn of the century when Dr. Alfred Ploetz founded the Archives of Race-Theory and Social Biology in 1904 and the German Society of Racial Hygiene in 1905. The German term Rassenhygiene or race hygiene encompassed more than the word "eugenics;" it included all attempts to improve hereditary qualities as well as measures directed at population increase (III, Weiss 1987). By the 1920s, various German textbooks incorporated ideas of heredity and racial hygiene, and German professors were participating in the international eugenics movement. The Kaiser Wilhelm Institute of Anthropology, Human Heredity, and Eugenics was founded in 1927; by 1933 a sterilization law, the Law for the Prevention of Congenitally Ill Progeny, which originally was entitled "Eugenics in the Service of Public Welfare," indicated compulsory sterilization "for the prevention of progeny with hereditary defects" in cases of "congenital mental defects, schizophrenia, manic-depressive psychosis, hereditary epilepsy... and severe alcoholism." (III, Müller-Hill 1988, p. 10).The co-mingling of science, politics, and Weltanschauung (ideological or religious world view) caused the darkest period for eugenics when Nazi Germans embarked on their "final solution" to the Jewish "problem", or the Holocaust. The Nazi racial-hygiene program began with involuntary sterilizations and ended with genocide. Beginning with the 1933 Law for the Prevention of Congenitally Ill Progeny, 350,000 schizophrenic and other mentally ill persons were involuntarily sterilized, and marriage or sexual contact between Jews and other Germans was banned. Several hundred black children and 30,000 German Gypsies were sterilized. By 1945, when the allies liberated those remaining in Nazi concentration camps, six million Jews, 750,000 Gypsies, and 70,000 German psychiatric patients had been killed by the Nazis (III, Müller-Hill 1992, p. 47). As a result of the German experience, eugenic thought dropped to its nadir, and to the present day, the term "eugenics" invokes a sense of horror in some people.Great Britain, the United States, and Germany were the countries most involved with eugenic science in the first half of this century, but interest was present in Europe and other... (shrink)

This paper considers whether a physician is criminally liable for administering a dose of painkillers that hastens a patient's death. The common wisdom is that a version of the doctrine of double effect legally protects the physician. That is, a physician is supposedly acting lawfully so long as the physician's primary purpose is to relieve suffering. This paper suggests that the criminal liability issue is more complex than that. Physician culpability can be based on recklessness, and recklessness hinges on whether (...) a physician has taken an unjustifiable risk of hastening death. The authors identify three conditions of justifiability. Their analysis helps to explain the distinction between euthanasia, which is legally banned, and the use of risky analgesics, which is permitted in limited circumstances. (shrink)

: This paper considers whether a physician is criminally liable for administering a dose of painkillers that hastens a patient's death. The common wisdom is that a version of the doctrine of double effect legally protects the physician. That is, a physician is supposedly acting lawfully so long as the physician's primary purpose is to relieve suffering. This paper suggests that the criminal liability issue is more complex than that. Physician culpability can be based on recklessness, and recklessness hinges on (...) whether a physician has taken an unjustifiable risk of hastening death. The authors identify three conditions of justifiability. Their analysis helps to explain the distinction between euthanasia, which is legally banned, and the use of risky analgesics, which is permitted in limited circumstances. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.1 (2002) 103-113 [Access article in PDF] Scope Note Update Searching Across Boundaries: National Information Resource on Ethics and Human Genetics* While indeed an historical moment, the announcement of the mapping of the human genome has been treated in the literature as a beginning—a new way to think about biology and the ways in which biological concepts are applied to medicine. Issues of both (...) Science and Nature magazines celebrated the event by establishing interdisciplinary websites where readers can access essays on aspects of genome mapping and directly link to databases to search for more information on the topics (IV. Genome Gateway 2001; The Human Genome 2001). Since 1994, the National Information Resource on Ethics and Human Genetics (NIREHG), a special project of the National Reference Center for Bioethics Literature (NRC), has been providing such an integrated information service on ethics and genetics. Designed to enable a wide range of users to go from annotated bibliographies (Scope Notes) and brief essays (called "enotes") to database searching, NIREHG fosters an interdisciplinary approach to research on ethics and genetics. Links are provided between and among Scope Notes and enotes to information maintained on the NIREHG site as well as to sources found throughout the Internet. In providing the following annotations added to NIREHG materials since 1997, the Kennedy Institute of Ethics Journal (in its online presence through Project Muse) becomes an additional forum for NIREHG links. "It is a rare and wonderful moment when success teaches us humility, and this, I argue, is precisely the moment at which we find ourselves at the end of the twentieth century" (IV. Keller 2000, p. 7). It is with both joy and humility that we celebrate the mapping of the human genome. [End Page 103] I. Genetic Testing Andrews, Lori B. Future Perfect: Confronting Decisions About Genetics. New York: Columbia University Press, 2001. 264 p.Noting the wide impact of genetic testing, Andrews discusses patient self concept, reproduction decisions, confidentiality, discriminations in health insurance and employment, the need for competent counseling, and the legal, ethical, and social regulations she deems important to help solve dilemmas arising from the tests and their ensuing ramifications. She describes three models, pointing out both advantages and problems: a medical model with physician gatekeepers, a public health model that could provide education as well some testing for those unable to afford tests, and a fundamental rights model that could give greater weight to individuals decisions about the use of health care services. The book has 85 pages of footnotes.American Society of Human Genetics. Social Issues Subcommittee on Familial Disclosure. Professional Disclosure of Familial Genetic Information. American Journal of Human Genetics 62 (2): 474-83, February 1998.The ASHG statement outlines points to consider: the general rule of confidentiality, exceptional circumstances that permit disclosure, and the ethical duty to inform patients about familial implications. Background discussion includes: ethical frameworks for disclosure of otherwise confidential information, the duty to warn under law, and international trends and positions.Boetzkes, Elisabeth. Genetic Knowledge and Third-Party Interests. Cambridge Quarterly of Healthcare Ethics 8 (4): 386-92, Summer 1999.Protection from the interests of insurers or prospective employers are discussed from the point of view of the ethical basis of the professional obligation to confidentiality as well as the right to privacy of those tested. However, the author supports family members, saying that "first-party resistance to disclosure may be overcome by weighty third-party claims."Chadwick, Ruth; Shickle, Darren; ten Have, Henk; and Wiesing, Urban, eds. The Ethics of Genetic Screening. Dordrecht, The Netherlands: Kluwer Academic Publishers, 1999. 255 p.Twenty-one chapters and 23 authors provide views of genetic testing/screening in different European countries and offer brief discussions of sociological perspectives, moral and philosophical issues, privacy, reconciling liberty and the common good, and questions raised in genetic testing of children.Clayton, Ellen Wright. Genetic Testing in Children. Journal of Medicine and Philosophy 22 (3): 233-51, June 1997.Clayton argues that there is room for... (shrink)

The importance of ethical consumerism to many companies worldwide has increased dramatically in recent years. Ethical consumerism encompasses the importance of non-traditional and social components of a company's products and business process to strategic success - such as environmental protectionism, child labor practices and so on. The present paper utilizes a random utility theoretic experimental design to provide estimates of the relative value selected consumers place on the social features of products.

Nearly all studies of consumers’ willingness to engage in ethical or socially responsible purchasing behavior is based on unconstrained survey response methods. In the present article we ask the question of how well does asking consumers the extent to which they care about a specific social or ethical issue relate to how they would behave in a more constrained environment where there is no socially acceptable response. The results of a comparison between traditional survey questions of “intention to purchase” and (...) estimates of individuals willingness-to-pay for social attributes in products reveal that simple survey questions are too “noisy” to provide operationally meaningful information and overstate intentions to a considerable extent. (shrink)

... The purpose of this paper is to try to clarify the extent to which consumers “value” ethical product features when making purchases by utilizing a distinctive methodology – structured choice experiments ( Louviere et al., 2000) – that What Will Consumers Pay ... Jordan J. Louviere ... \n.

In lieu of an abstract, here is a brief excerpt of the content:Philosophy and Rhetoric 35.1 (2002) 1-21 [Access article in PDF] Turning Kant Against the Priority of Autonomy: Communication Ethics and the Duty to Community Pat J. Gehrke Communication ethics scholars afford Immanuel Kant significantly less attention than one might expect. This may be because, as Robert Dostal notes, Kant argues that rhetoric merits no respect whatsoever (223). This rejection of rhetoric, Dostal writes, is grounded in the significant emphasis (...) given to Kant's concept of autonomy (232). The focus on autonomy and, hence, rhetoricians' relative neglect of Kant's ethical theory are both connected to the separation of Kant's Critique of Pure Reason (hereinafter CPuR) from his subsequent ethical and moral philosophy. Kenneth Burke writes that Kant's first critique has no ethical implications, "no 'wills,' 'oughts,' 'shoulds,' or 'thou shalt nots'... nothing but an inevitable is, a description of conditions as they necessarily are for human experience" (191; emphasis in original). Such readings lose much of the richness and complexity of Kant's thought and tend instead to produce simple moral duties, such as Mike Markel's assertion that technical communicators must be truthful.Perhaps the most critical element of Kant's work lost in our focus on autonomy is his articulation of a ground for a duty to community. While Kant makes clear the importance of community for his metaphysics in the first critique (CPuR), the importance of community in Kant's moral philosophy often is overlooked. Some scholars claim that an ethical duty to community is either rejected by Kant's emphasis on the autonomy of will or simply ignored. This article combines a reading of Kant's metaphysics of experience with his moral philosophy to articulate a communication ethic grounded in community. This argument is made in three parts: first, the community of objects in experience—the Third Analogy of Experience—is an organizing principle of and a necessary condition for the possibility of all experience; second, this metaphysical principle of community is relevant [End Page 1] to community as developed in Kant's ethical writings; and finally, Kant's own work undermines the primacy of autonomy and better supports a communication ethic grounded in a duty to community.Scholars interested in Jurgen Habermas's theory of communicative action have special reason to take note of Kant's work. Kant is not only a figure that Habermas sees reflected in his own work, 1 but a constant point of contrast. Craig Calhoun writes that much of Habermas's own philosophy emerges by rejecting Kant's epistemology and elements of his metaphysics while still giving credence to Kantian moral philosophy (2). However, like most communication scholars and philosophers, Habermas believes that autonomy governs Kantian ethics: "Formalistic ethics (Kant) binds the criterion of generality of norms to the further criterion of autonomy, that is, independence from contingent motives" (Habermas, Legitimation 89). Since autonomy excludes or represses the contingent, if our readings of Kant give primacy to autonomy we leave little room for any notion of community as manifest in experience. In no small part, it is the criticism of Kant for privileging autonomy that has given Habermasians their break from Kantian ethics. However, if we turn to the first critique to guide our reading of the moral philosophy, there is another way to understand the role of autonomy and community in Kant's thought. By linking Kant's metaphysics with his moral philosophy, this article turns Kant away from the primacy of autonomy and uses Kant's own works to argue that autonomy is but one half of an antinomy that is organized under the principle of community. Thus, this article recuperates the possibility of deploying Kantian metaphysics and moral philosophy together as grounds for a communication ethic that privileges community and recovers the value of rhetoric.For rhetorical scholars, the resistance to the priority of autonomy may be related to the frequent expression of community through appeal to commonality, sameness, or identification. Today, feminist, race, postmodern, and poststructural communication scholars are questioning the value of commonality as a ground for ethics (e... (shrink)

Using touch as a medium for exploring the ways in which it is constructed by nurses, the body is here characterized by a plethora of competing and co‐existing terms: disobedient, obedient, mirroring, stigmatized, sinful, post‐mortem, sanitized, angelic, desexualized, dangerous, dominant, dominating, deceitful, submissive, disciplined, postmodern and communicative. We have tried to be provocative by juxtaposing contradictory messages and evoking conflicting emotions, and we hope that the reader will not assume that we believe everything we write, or that everything may be (...) taken only at face value. There are as many messages and meanings in the paper as each reader thinks there are. (shrink)

Pierre Bourdieu was one of the most important thinkers of the twentieth century. He argued for, and practiced, rigorous and reflexive scholarship, interrogating the inequities and injustices of modern societies. Through a lifetime's explication of the ways in which schooling both produces and reproduces the status quo, Bourdieu offered a powerful critique and method of analysis of the history of schooling, and of contemporary educational polices and trends. Though frequently used in educational research, Bourdieu's work has had much less take (...) up in Educational Leadership, Management and Administration. Educational Leadership and Pierre Bourdieuargues that ELMA scholars have much to gain by engaging more thoroughly with his work. The book explains each of the key terms in Bourdieu's thinking tool kit, showing how the tripartite concepts of field, habitus and capitals offer a way through which to understand the interaction of structure and agency, and the limits on the freedom of an individual - in this case an educational leader - to act. Educational Leadership and Pierre Bourdieuoffers an analysis of dominant trends in ELMA research, examining the kinds of questions asked, projects undertaken and methods used. It provides alternative questions and methods based on a Bourdieusian approach, further readings and a range of exemplars of the application of these tools. The book will be of interest to those whose primary focus is the utility of Bourdieu's social theory. (shrink)

Any panpsychism building complex consciousness out of basic atoms of consciousness needs a theory of ‘mental chemistry’ explaining how this building works. This paper argues that split-brain patients show actual mental chemistry or at least give reasons for thinking it possible. The paper next develops constraints on theories of mental chemistry. It then puts forward models satisfying these constraints. The paper understands mental chemistry as a transformation consistent with conservation of consciousness rather than an aggregation perhaps followed by the creation (...) of something in addition. The paper suggests that this kind of mental chemistry alone yields a workable panpsychism. (shrink)

This study uses best–worst scaling experiments to examine differences across six countries in the attitudes of consumers towards social and ethical issues that included both product related issues (such as recycled packaging) and general social factors (such as human rights). The experiments were conducted using over 600 respondents from Germany, Spain, Turkey, USA, India, and Korea. The results show that there is indeed some variation in the attitudes towards social and ethical issues across these six countries. However, what is more (...) telling are the similarities seen and the extent to which individual variation dominates observable demographics and country-based variables. (shrink)

On the importance of sociological and political thoughts to develop India.

This study uses best–worst scaling experiments to examine differences across six countries in the attitudes of consumers towards social and ethical issues that included both product related issues (such as recycled packaging) and general social factors (such as human rights). The experiments were conducted using over 600 respondents from Germany, Spain, Turkey, USA, India, and Korea. The results show that there is indeed some variation in the attitudes towards social and ethical issues across these six countries. However, what is more (...) telling are the similarities seen and the extent to which individual variation dominates observable demographics and country-based variables. (shrink)

The most plausible type of panpsychism explains high-level consciousness as a compound of basic conscious properties instantiated by basic bottom-level physical objects. Arguments for panpsychism stand little chance in the absence of an account that makes sense of basic bottom-level experience; and explains how basic bottom-level experiences yield high-level experiences. This paper tackles the first task. It develops a method for investigating basic bottom-level experience: it identifies constraints, motivated by scientific and philosophical considerations, that force a unique account. Then it (...) applies this method, using quarks as stand-ins for basic but conscious physical objects. It concludes that quark-consciousness is maximally simple ; multiple ; and internal. (shrink)

Because psychiatry deals specifically with ‘mental’ suffering, its efforts are always centrally involved with the meaningful world of human reality. As such, it sits at the interface of a number of discourses: genetics and neuroscience, psychology and sociology, anthropology, philosophy, and the humanities. Each of these provides frameworks, concepts, and examples that seek to assist our attempts to understand mental distress and how it might be helped. However, these discourses work with different assumptions, methodologies, values, and priorities. Some are in (...) dispute with one another. At various times in the history of psychiatry, a particular form of understanding has become dominant and worked to marginalize .. (shrink)

But still I think some account has to be given of the application of CM to tides and cannon balls etc. etc. It seems to me that Einstein's and Bohr's analysis was essentially correct: we make the connection, and thus apply the mathematical statements of CM to macroscopic features of the world about us, by constructing, within the mathematical framework,. macroscopic conglomerates of the elementary particles and fields that should have the general appearance of tides and billiard, looked at from (...) a distance, and that would respond to the probings of mathematical models of measuring devices, whose "pointers" we can see from afar, in the ways that waves and billiard balls do. I think a look at how CM has been used and applied since the time of Newton and Galileo shows that the mathematical theory is linked into our experiences of the world in this nonproblematic way, and that this correspondence at this nonproblematic level is part of classical mechanics in the broad sense in which it is understood by people who use it. (shrink)

Phenomenology has contributed to healthcare by providing resources for understanding the lived experience of the patient and their situation. But within a burgeoning literature on the characteristic features of illness, there has not yet been an account appropriate to describe congenital illnesses: conditions which are present from birth and cause suffering or medical threat to their bearers. Congenital illness sits uncomfortably with standard accounts in phenomenology of illness, in which concepts such as loss, doubt, alienation and unhomelikeness presuppose prior health. (...) These accounts reflect, in different ways, Maurice Merleau-Ponty’s assumption that the ways of living of the ill contain allusions to fundamental, healthy functions. The originality of congenital illness complicates this assumption and demands its own original phenomenology. In this paper, I sketch my personal experience living with a single-ventricle heart condition. While some of this story may reflect my own idiosyncratic experience, I hope that much of it will resonate with the congenital illness experience. I argue that the phenomenological literature on illness, grounded in the notion of loss, does not describe the congenital illness experience. I show how a number of other patient-centred theories of health and illness which have been influential on phenomenology can and cannot elucidate congenital illness. In particular, I consider Georges Canguilhem’s account of the normal and the pathological; debates in disability; and the notion of illness as biographical disruption. I show that congenital illness results in the preadmission of its patients to a paradoxical logic of medical palliation, one product of which is existential maturity. (shrink)

Phenomenology has a rich tradition of interpreting technology, medicine, and the life sciences. It has not yet had much to say about the medical devices which have always been central to bioethics. In this chapter, I outline what is meant by medical devices, and connect the sense of intention in made-object design with the notion of intentionality in phenomenology. I survey three basic ways of characterising medical devices grounded in the phenomenological literature: Albert Borgmann’s device paradigm, Don Ihde’s human-machine relations, (...) and Merleau-Ponty’s body-subject. Engaging with these approaches could help bring to analyses of medical devices the uniquely whole-of-context view of which phenomenology is capable, and better inform all stakeholders about their phenomenal consequences. (shrink)

This peer commentary opens with setting the context for decisions on the edge of viability through an autoethnographic account (Bochner and Ellis 2016) of the author’s experience of such a situatio...

Therapeutic misconception involves the failure of subjects either to understand or to incorporate into their own expectations the distinctions in nature and purpose of personally responsive therapeutic care, and the generic relationship between subject and investigator which is constrained by research protocols. Researchers cannot disregard this phenomenon if they are to ensure that subjects engage in research on the basis of genuine informed consent. However, our presumption of patient autonomy must be sustained unless we have compelling evidence of serious misunderstanding. (...) This article argues that the mere expression of aspects of therapeutic misconception should not necessarily displace the presumption of subject autonomy or undermine ethical inclusion in research for at least three reasons. First, some interpretations of the empirical data do not suggest misunderstanding. Second, assessment of misestimation and optimism are delicate and value-laden, and turn quickly from questions of autonomy to questions of judgment. Third, incomplete understanding may yet be sufficient to allow a subject to engage in a substantially autonomous decision-making process. Our point is not to dismiss the possibility of genuine therapeutic misconception, but to question its frequency and fatality to the consent process. (shrink)

One of the sub-branches of Central Semitic, Northwest Semitic, contains a number of languages with no established hierarchical relation among them: Ugaritic, Aramaic, Canaanite, Deir Alla, and Samalian. Over the years, scholars have attempted to establish a more accurate sub-branching for Northwest Semitic or to suggest a different genetic affiliation for some languages, usually Ugaritic. In this paper, we will argue that Aramaic and Canaanite share a direct ancestor, on the basis of a number of morphosyntactic features: the fs demonstrative (...) *ðaˀt, the direct object marker *ˀayāt, the development of dative subjects with adjectival predicates, the use of the construct state with prepositions, the G imperfect inflection of geminate verbs, and the plural form of *bayt. We will also address arguments that Ugaritic is a Canaanite dialect, or that Canaanite and Ugaritic are more closely related. This proposal not only outlines a more coherent family tree for Northwest Semitic, but also accounts for numerous “Aramaic”-like features in some Canaanite dialects, primarily Biblical Hebrew, which have thus far been treated as the result of language contact in the early Iron Age. (shrink)