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.

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.