Laurie Zoloth

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.

This chapter addresses how the textual tradition of Jewish thought regards the problem of human suffering in theological and moral terms. It highlights core differences in the tradition that have come to define and delineate one of the most salient issues in American bioethics: the way that human suffering and its tragic or redemptive nature is at stake in debates as varied as stem cell research, end-of-life care, and reproductive policy. The chapter looks at the historical view of suffering, from the classical to early and postmodern thinkers, and then sketches some outlines for how the view of suffering in Jewish thought is developed and debated, finally showing how one rabbinic text structures a response of reversibility between healer and patient. The chapter concludes with some ideas about how an appreciation of the different voice that Judaism brings to ethics may largely be because of its different evaluation of suffering.

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.

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.

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.

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.

Mechanical devices implanted in the body present implications for broad themes in religious thought and experience, including the nature and destiny of the human person, the significance of a person's embodied experience, including the experiences of pain and suffering, the person's relationship to ultimate reality, the divine or the sacred, and the vocation of medicine. Community-constituting convictions and narratives inform the method and content of reasoning about such conceptual questions as whether a moral line should be drawn between therapeutic or enhancement interventions and/or between somatic and neural/cognitive interventions. By attending to these broader community-forming concepts, it is possible to identify three general orienting themes in religious perspectives on incorporated mechanical devices, which we shall designate as perspectives of “appropriation,” “ambivalence,” and “resistance.”

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?

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?