In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. Danforth, letter to (...) the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Private Bioethics Forums:Counterpoint to Government BodiesCynthia B. Cohen (bio) and Elizabeth Leibold McCloskey (bio)Ethical issues associated with reproductive technologies quickly gain public attention. The front pages of newspapers have featured stories about grandmothers giving birth to their own grandchildren, couples "renting" wombs from surrogates, and researchers prepared to transplant fetal ovaries into women unable to produce viable eggs. With each new and bolder foray into reproductive realms, the question (...) of whether to set limits on the use of such technologies surfaces. An ancillary debate inevitably ensues about the proper forum for discussing and deciding such limits. The recent announcement of human embryo splitting or cloning research is no exception to this pattern. Articles in both the popular press and academic circles in the wake of the reported research contain lamentations about the absence of a national ethics body that could address the ethical issues raised by the cloning experiment. This research also breathed new life into congressional calls to create a government bioethics commission.1At times, it appears that the substantive questions raised by a procedure like cloning are subsumed under the debate about whether this ethics group or that should be convened to study the matter. But the forum in which options are discussed is as crucial to the development of sound ethical thought and public policy as are the conclusions themselves. Thus, we address the question of whether a private, as opposed to a public, bioethics body provides a distinctively useful forum for reaching an understanding of issues such as cloning that have significant ethical and public policy implications.A 1993 Office of Technology Assessment report, in which the authors suggest that a new federal bioethics commission might be useful, has helped to frame recent discussions about the value of government-sponsored bioethics bodies (Office of Technology Assessment 1993). To most people, the question of whether a national forum for bioethics is needed is synonymous with the question of whether a new federal body should be convened. Yet the existence of the National Advisory Board on Ethics in Reproduction (NABER) suggests that the scope of the question should be broadened. [End Page 283]NABER was born in 1992, in part as a response to an Institute of Medicine report on infertility. That document endorsed the formation of a nongovernment body to develop guidelines for assisted reproductive measures and fetal research in the event that a government body was not forthcoming (Institute of Medicine 1989). NABER, which was founded by the American College of Obstetricians and Gynecologists and the American Fertility Society, now functions wholly independently of those groups and is supported by private foundations including the Ford, Greenwall, and Josiah Macy, Jr., Foundations and the Walter and Elise Haas Fund. NABER has issued a report on ethical issues related to the use of fetal tissue (Cohen and Jonsen 1993), is about to publish a report and background papers on oocyte donation, and presents a report on human cloning in this issue of the Kennedy Institute of Ethics Journal. In addition, it has developed a protocol for NABER review of research proposals from federal agencies subject to federal guidelines on the use of human subjects in research.Thus, in function and form, NABER was envisioned as a substitute for a government body, and it now functions in a manner similar to several types of government bioethics groups. Like the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (President's Commission), NABER functions primarily through the publication of reports intended for a broad audience of practitioners, patients, policymakers, and the general public. Just as the Ethics Advisory Board of the late 1970s examined ethical issues related to specific protocols or types of research as they arose, NABER's purposes include scrutinizing the ethics of various research efforts in the reproductive area.NABER also parallels past government bodies in form. Like these groups, NABER is a multidisciplinary board that meets regularly and is supplemented by consultants and staff who provide research and writing for the board. Its members are nationally recognized in... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:IntroductionCynthia B. CohenThe explosion of genetic information in recent years raises a fundamental question for us as individuals and as members of various communities: Have we an obligation to know as much as possible about our genes—or should we bypass genetic information, leaving it hidden? A terrible ambivalence grips us when it comes to our genes. We want to respond to the Socratic call to know ourselves by learning (...) what lies on the minute threads of the chromosomes spun into the nuclei of our cells. At the same time, we fear obtaining that information, for it seems functionally equivalent to the oracle at Delphi, revealing a distinct and dangerous knowledge we would rather not have.What is it about genetic knowledge that creates such ambivalence in us? Genetic knowledge is empowering. It offers us the freedom to shape the contours of our lives and those of our families. At the same time, genetic knowledge is disempowering. It bears a peculiar mark of inevitability, telling us that we have no control over our present or future in important respects. Better to hide from such overbearing information than to suffer the assaults on our freedom it seems to create.We can see this ambivalence about genetic knowledge appearing again and again as the field of genetics has grown. Initially, genetics emerged as a tool for understanding how traits and diseases are passed from generation to generation. We used genetic testing mostly to enhance our personal decision making about reproductive matters. It was at this time that our hesitancy about pursuing such testing first arose, for we feared being put into a position of asking such painful questions as, “Knowing what we do about our genes, should we have children?” As the scope of genetic information expanded, we learned to test for genes that could signal the development of such terrible conditions as Huntington’s disease. The possibility of gaining access to such disturbing information exacerbated our fear of genetic knowledge—to some, the certainty of knowing seemed worse than the uncertainty of not knowing. As genetic research has disclosed genes associated with conditions that might, but not necessarily will occur, the uncertainty of knowing, to some, seems worse than that of not knowing. Further, questions focused on individuals, although still pertinent, are being supplanted by broader questions about families and [End Page vii] social groups. When added to the personal agony that genetic information can engender, the specter of egregious discrimination seems to some to outweigh the value of knowing. As the net is cast further and further from the initial genetic inquiries, the call to halt or control certain kinds of genetic testing is growing increasingly loud.Ambivalence about whether to obtain genetic information hovers over the pages of this issue of the Kennedy Institute of Ethics Journal. The authors address both the promise and the threat of the information to be derived from genetic tests. Each examines a different facet of the problem of knowing that vexes the terrain of genetic technology and proposes blueprints for resolving it.Cynthia B. Cohen opens by examining whether genetic testing should be used to unearth information about conditions children might develop later in life. She challenges the current trend within the professional genetics community to keep such information hidden, claiming that the putative psychosocial burdens of receiving that information are outweighed by the psychosocial benefits. Moreover, Cohen maintains that having such information can enhance, rather than impair, the adult autonomy of children. She offers a framework for assessing whether to test in individual cases and maintains that it is the responsibility of parents to make the final decision for their children.A similar response to our ambivalence about obtaining genetic knowledge is given by Robert Wachbroit. In discussing the dilemma caused by pleiotropic genetic tests—those in which a single gene mutation is involved in several apparently unrelated diseases—he favors fully disclosing their dual nature to patients before testing. Wachbroit’s emphasis on openness extends beyond informed consent recommendations, for he maintains that patients have an obligation to know as much about their genetic proclivities as possible. He goes on to confute the common wisdom that genetic information is... (shrink)