The debate about what constitutes the discipline of ethics and who qualifies as an ethics consultant is linked unavoidably to a debate that is potentiated by the reality of a rapidly changing and high-stakes health care consultation marketplace. Who we are and what we can offer to the moral gesture that is medicine is shaped by our fundamental understanding of the place of expert knowledge in the transformation of social reality. The struggle for self-definition is particularly freighted since clinical ethics (...) consultation aspires to be more than academic contemplation. Two recent books (Ethics Consultation by John La Puma and David Schiedermayer and The Health Care Ethics Consultant: A Practical Guide, edited by Francoise Baylis) exemplify the two most popular but most widely divergent positions on these issues. We argue that while useful, neither book addresses fully the particular and distinct role of the professional ethicist. (shrink)

Clinical ethics, like the broader field of bioethics from which it emerged, is at a critical crossroads in its development, with conflicting paths ahead. It can either claim its distinctive place in the clinical arena, insisting unapologetically on certain minimal standards of professional training, practice and competence, addressing head on debates about various models of and methodological approaches to consultation, and establishing a shared vision of the purpose and meaning of the enterprise of clinical ethics itself. Or, it can devolve (...) into a hobby that untrained, albeit interested, and generally well intentioned individuals can dabble in for fun or even profit, as they see fit, and without regard to the deep history and rich disciplinary roots of the field, the serious debates in the academic literature of bioethics, the foundational case histories and legal theories, or even any sense of professional accountability. (shrink)

The use of high hypothetical payoffs has been justified by the realism and relevance of large monetary consequences and by the impracticality of making high cash payments. We argue that subjects may not be able to imagine how they would behave in high payoff situations.

ABSTRACTThis commentary examines the relationship between genetics and Jewish identity. It focuses especially on the use of Y‐chromosome testing to map the genealogies of the Lemba in southern Africa.

Laurie Zoloth; Limiting Access to Medical Treatment in an Age of Medical Progress: Developing a Catholic Consensus: A Response from Jewish Tradition, Christian.

This is a book about writing and thinking about bioethics of a particular sort, a feminism of a particular sort, and a Jewish philosophy of a particular sort. It is about all of these things-feminist thought, Judaism, and the practice of bioethics-as I have written about them in a distinctive moment in the field and from the moral location from which I worked, which was as an academic in the disciplines of Jewish Studies and moral philosophy who also worked as (...) a clinical ethicist in a large public hospital. These are cases of children and families facing illness and death within the clinical world, a world of scarcity, desperation, and grace, and the choices they make within that world. It explores the meaning of these choices and reflects on why the dilemmas are so important in our society. The book considers the moral gesture that is medicine and the role of the ethicist as she comes to learn her practice. This is a book about the memory and meaning, re-evaluated and considered in light of the traditional texts of Jewish thought. (shrink)

This essay will address the ethical issues that have emerged in the first considerations of the newly emerging stem cell technology. Many of us in the field of bioethics were deliberating related issues as we first learned of the new science and confronted the ethical issues it raised. In this essay, I will draw on the work of colleagues who were asked to reflect on early stages of the research (members of the IRBs, the Geron Ethicist Advisory Board, and the (...) National Bioethics Advisory Commission) as the field debated the issues of consent, moral status, use of animal tissues, abortion, use of fetal tissue, and the nature and goals of entrepreneurial research. In this new capacity, ethicists weighed the problem of privacy, the role of justice considerations, and the issues of the marketplace in science. At this point, it is clear that far more issues remain unresolved than are settled, that there is largely unexplored territory ahead, and that the single most important task that faces us as a field is a steady call for ongoing conversation and public debate. (shrink)

Jewish ethics provides resources not only for exotic cases, but also for the practical necessities of everyday business practice, such as sustaining non-profit health care. Non-profit health care presents tough choices for justice because it is motivated by community compassion but must meet the pressures of the marketplace. Feminist ethics offers an "ethics of care" to guide our actions in such conflicts. This article argues that an ethics derived from both ferrlinism and Jewish sources calls for a different approach, one (...) which is rooted in the history of business practice, in the history of women's leadership in this health care, and in the Jewish legal teaching (halacha) that seeks a balance between competing moral appeals in the marketplace. (shrink)

In its excitement over the quandries posed by biotechnology, bioethics is in danger of neglecting basic health care needs. What is needed is an understanding of ethics that emphasizes responsibility to others rather than rights.

Oncofertility is one of the 9 NIH Roadmap Initiatives, federal grants intended to explore previously intractable questions, and it describes a new field that exists in the liminal space between cancer treatment and its sequelae, IVF clinics and their yearning, and basic research in cell growth, biomaterials, and reproductive science and its tempting promises. Cancer diagnoses, which were once thought universally fatal, now often entail management of a chronic disease. Yet the therapies are rigorous, must start immediately, and in many (...) cases result in premature failure of the body's reproductive ability. In women, this loss is especially poignant; unlike the routine storage of sperm, which is done in men and boys facing similar treatment decisions, freezing oocytes in anticipation of fertility loss is not possible in most cases, and creating an embryo within days of diagnosis raises significant moral, social and medical challenges. Oncofertility is the study of how to harvest ovarian tissue in women facing cancer to preserve their gametes for future use with IVF, thus allowing the decisions about childbearing to be deferred and reproductive choices to be preserved. The research endeavor uses the capacity of the ovarian follicle to produce eggs in vitro . Developing the human follicle to ovulate successfully outside the body is scientifically difficult and ethically challenging. Infertility is linked to long-standing religious and moral traditions, and is intertwined with deeply contentious social narratives about women, families, illness and birth. Is the research morally permissible? Perhaps imperative if understood as a repair from iatrogenic harms? How are considerations of justice central to the work? How will vulnerable subjects be protected? What are the moral implications of the work for women, children and families? What are the implications for society if women could store ovarian tissue as a way of stopping the biological clock? What are the moral possibilities and challenges if eggs can be produced in large quantities from a stored ovarian tissue? (shrink)

The field of bioethics is by definition based on the presupposition that questioning, arguing, interruption, and response are the means by which we evaluate the truth claims of medicine and healthcare policy. The field began with the premise that another voice, one of at least critique, if not dissension, was just what was needed in any arena in which hegemonic expertise held sway. The field of the humanities is similarly based on the idea that both the literary and cultural canonare (...) acknowledged, taught, and honored. In situ in the clinic, on national boards, or in the literature, when a philosopher perceives a unanimity, she begins to be uneasy and begins to do the very thing she is trained for: to raise the questions of definition, method, data, motive, and goal. (shrink)

(2001). Making the Things of the World: Narrative Construction and the Project of Bioethics. The American Journal of Bioethics: Vol. 1, No. 1, pp. 59-61.

Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. (...) Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on ‘responsive autonomy,’ that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants' wishes on how they want their data and samples used and enabling effective research to proceed. (shrink)

In this essay, the author considers how one particular faith community, contemporary Judaism, in all its internal diversity, has reflected on the issue of how far the project of genetic intervention ought to go when the subject of the future - embodied, willful, and vulnerable - is at stake. Knowing, naming, and acting to change is not only a narrative of faith traditions; it is a narrative of biological science as well.

Oncofertility is one of the 9 NIH Roadmap Initiatives, federal grants intended to explore previously intractable questions, and it describes a new field that exists in the liminal space between cancer treatment and its sequelae, IVF clinics and their yearning, and basic research in cell growth, biomaterials, and reproductive science and its tempting promises. Cancer diagnoses, which were once thought universally fatal, now often entail management of a chronic disease. Yet the therapies are rigorous, must start immediately, and in many (...) cases result in premature failure of the body's reproductive ability. In women, this loss is especially poignant; unlike the routine storage of sperm, which is done in men and boys facing similar treatment decisions, freezing oocytes in anticipation of fertility loss is not possible in most cases, and creating an embryo within days of diagnosis raises significant moral, social and medical challenges. Oncofertility is the study of how to harvest ovarian tissue in women facing cancer to preserve their gametes for future use with IVF, thus allowing the decisions about childbearing to be deferred and reproductive choices to be preserved. The research endeavor uses the capacity of the ovarian follicle to produce eggs in vitro. Developing the human follicle to ovulate successfully outside the body is scientifically difficult and ethically challenging. Infertility is linked to long-standing religious and moral traditions, and is intertwined with deeply contentious social narratives about women, families, illness and birth. Is the research morally permissible? Perhaps imperative if understood as a repair from iatrogenic harms? How are considerations of justice central to the work? How will vulnerable subjects be protected? What are the moral implications of the work for women, children and families? What are the implications for society if women could store ovarian tissue as a way of stopping the biological clock? What are the moral possibilities and challenges if eggs can be produced in large quantities from a stored ovarian tissue? (shrink)

In the move to critique managed care, the essential principles that first made it a reasonable alternative to fee-for-service medicine can easily be lost. Careful reflection on the history of early grassroots movements that created managed care, and on selected textual narratives of the founders of the managed care organizations at their inception, offers us insight into which of the critical premises and goals of that effort might be reclaimed as we analyze the current managed care environment.

This chapter explores one of the most important new frontiers in medicine—namely, the new genetics—addressing the issues of identity and free will that genetics raises in new ways. It then uses the case of a woman with “the breast cancer gene” as an example of how genetic testing poses excruciating, new questions to the women affected and their families. Aside from the practical questions of what to do when faced with such a diagnosis, does this and the other Ashkenazi Jewish (...) genetic diseases serve as a basis for the “discrimination, stigmatization, and marginalization” of Jews generally? Should Jews and others think of Jews as a “sick” people? For Jews, of course, such discussion of eugenics has a painful past in both the United States and in Nazi Germany. This is complicated yet further by the fact that in some cases, as with the breast cancer gene, the presence of the gene does not guarantee that the woman will have cancer but only adds to the probability of that happening. What, then, if anything, should be done with such a diagnosis? Furthermore, the availability of pre-natal testing for genetic diseases could easily create expectations in the future that families with a history of a particular genetic disease be tested for it, and if they bear a child with the disease, they may be seen as morally delinquent to both the child and society. The analysis brings Jewish concepts and values to bear on these questions. (shrink)

: The controversy about research on human embryonic stem cells both divides and defines us, raising fundamental ethical and religious questions about the nature of the self and the limits of science. This article uses Jewish sources to articulate fundamental concerns about the forbiddenness of knowledge in general and of knowledge thought of as magical creation. Alchemy, and the turning of elements into gold and into substances for longevity, and magic used for the creation of living beings was at stake (...) in various Talmudic texts. Since contemporary discourse calls regenerative science magical, and makes claims about its restorative power, careful reflection on when magic is forbidden and when it is responsible allows a novel understanding of ethical questions in stem cell research. (shrink)

Discusses the ethical issues involved in the use of human embryonic stem cells in regenerative medicine.

Disneyland is work disguised as play; school disguised as vacation. While Walt Disney’s curriculum deploys across all of its products, it literally engulfs the approximately 50 million ‘guests’ who visit the Disney Parks each year. Drawing on Sarah Ahmed’s phenomenological reading of orientation in Queer phenomenology, this article investigates the ways in which Disney’s didacticism is made material through practices and procedures designed to orient the park’s visitors, to ensure that those visitors always know where they are and who they (...) are, as a means of educating ‘good’ citizens. The argument focuses not on Disneyland’s narrative curriculum but on its corporeal one: visitors are enticed to make affective investments, to construct or reconstruct their identities to comply with the Disney version of the ideal American worker and consumer, as the park attempts to reorient those who resist those roles. (shrink)

While researchers have examined the types of ethical issues that arise in long-term care, few studies have explored long-term care nurses’ experiences of moral distress and fewer still have examined responses to initial moral distress. Using an interpretive description approach, 15 nurses working in long-term care settings within one city in Canada were interviewed about their responses to experiences of initial moral distress, resources or supports they identified as helpful or potentially helpful in dealing with these situations, and factors that (...) hindered nurses in their responses. Using a thematic analysis process, three major themes were identified from the nurses’ experiences: (i) the context of the situation matters; (ii) the value of coming together as a team; and (iii) looking for outside direction. The work of responding to initial moral distress was more fruitful if opportunities existed to discuss conflicts with other team members and if managers supported nurses in moving their concerns forward through meetings or conversations with the team, physician, or family. Access to objective others and opportunities for education about ethics were also identified as important for dealing with value conflicts. (shrink)

A substantial portion of the developed world's population is increasingly dependent on machines to make their way in the everyday world. For certain privileged groups, computers, cell phones, PDAs, Blackberries, and IPODs, all permitting the faster processing of information, are commonplace. In these populations, even exercise can be automated as persons try to achieve good physical fitness by riding stationary bikes, running on treadmills, and working out on cross-trainers that send information about performance and heart rate.