Stories Matter: The Role of Narrative in Medical Ethics

By Rita Charon; Martha Montello | Go to book overview

CHAPTER 19

NARRATIVE ETHICS, GENE STORIES, AND THE HERMENEUTICS OF CONSENT FORMS

LARRY R.CHURCHILL

Over the past two decades, the role and status of literary concepts and perspectives in bioethics has flourished and blossomed. In 1980, a few bioethicists were using literature as an interesting way to supplement standard ethical analysis in teaching health science students. But only a fraction of this minority were engaged in a methodological rethinking of the field of bioethics in the light of literature’s contributions to understanding the dynamics of human moral experience. Today no one can ignore the importance of literary skills for bioethics or the challenge literary scholars make to philosophy’s historical claim to hegemony over ethics more generally. Narrative ethics I understand as a term intended in part to capture the contributions that literary methods and perspectives can make—not just to the task of teaching bioethics—but to the tools practitioners bring to the discipline itself.

These contributions have been presented most powerfully and convincingly in three areas: (1) studies devoted to probing the thickness and illuminating the nuance of patients’ lives, as represented in their illness narratives; (2) inquiries into medical practice, primarily focused on the relationships between health care professionals and their patients or their patients’ families—for example, the way in which patient “histories” and ethics “cases” have been enriched and altered by using literary tools; and, most recently, (3) reflexive looks at bioethics itself in the efforts to interpret its role, status, and meaning as a professional and human enterprise. The essays in this volume are testimony to the vitality of literary ways of thinking and knowing in these three areas.

One of the striking things about this list is its focus on patients and patient care activities. Yet most bioethicists and medical humanities scholars also spend a great deal of their professional lives worrying about human subjects and medical research; for example, serving on institutional review boards (IRBs) and data safety monitoring boards (DSMBs), teaching about research ethics and scientific integrity, or collaborating with clinical investigators. Over the last decade, a substantial percentage of this time has been spent on genetics research. Yet little has been written about how narrative ethics might contribute to our understanding of

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