- Vulnerable Subjects: Ethics and Life Writing
Thomas Couser begins his new book by claiming (or rather disclaiming): "This is not a book about bioethics, much less a contribution to that field" (p. ix). Nonetheless, Vulnerable Subjects: Ethics and Life Writing is of great value to bioethics—specifically in relation to physicians' attitudes as well as their writings about patients. Couser cites the work of seminal figures of biomedical ethics, such as Tom Beauchamp, James Childress, Edmund Pellegrino, and Robert Veatch, to formulate a set of ethical principles of what he self-consciously terms "auto/biography" or "life writing," in other words, texts that represent individuals in ways that may encroach on their right to privacy. Vulnerable Subjects takes on ethical concerns within several genres of life writing, from journalism to popular autobiography to coauthored autobiography (such as the collaboration between Malcolm X and Alex Haley) to case studies, particularly those published by Oliver Sacks. It is within this emerging genre of physician writing marketed for a popular audience that there is perhaps the greatest need for further discussion and limits.
The breadth of Couser's book provides a critical awareness of the power of the published text and the potential for harm to its subjects. Couser enjoins authors and readers to set aside their motivations for wanting certain types of writing published in favor of consideration for the "vulnerable subjects" of that writing. "Today," Couser writes, "people with disadvantaging or stigmatizing conditions are increasingly visible in life writing, and those who represent them must take care not to override their interests or over-write their stories" (p. 14). Creating distinct subgenres within "life writing," Vulnerable Subjects methodically examines individual texts, demonstrating the case-by-case approach that complements the principles of ethics. Each chapter is a detailed and thorough close reading of texts and the relationships that influence their production.
In one chapter, Couser examines journalist Joe McGinniss's Fatal Vision, a book about Jeffrey MacDonald, a man convicted of murdering his wife and children. Couser questions the terms of the relationship that led MacDonald to reveal as much as he did to the author. In another chapter, Couser discusses the emerging genre he terms "euthanography," the published narratives of those who struggle with illness and pain and choose to end that struggle through euthanasia. In all cases Couser argues for what he calls "transactional visibility," the full disclosure of interests that requires the author to carefully and publicly analyze the costs and benefits to publication. Vulnerable Subjects calls attention to the different tensions at work in all life writing, from autobiography, which almost always includes intimate descriptions of others, to journalism to medical case studies. Teasing out specific conflicts of interest, Couser intensifies the reader's [End Page 626] awareness of ways in which the authors' motives may mask the harm done to their subjects.
The book's last chapter, "Genome and Genre: DNA and Life Writing," extends Couser's definition of "life writing" to include the human genome. Cautioning against violating individuals' rights to privacy and, in the case of genetic screening of fetuses, the potential for human life, Couser bases his argument on the commonplace metaphor of the genome as "the Book of Life." While the generic connection between this essay and the others in the collection is somewhat thin, the essay's contribution to the ethical discussion about the uses of genetic data is considerable. By chipping away at the perceived distinction between genome and the story of a life, Couser raises important concerns about the ways in which genetic testing impacts socially constructed modes of identity.
Citing the case in which a DNA test revised Thomas Jefferson's biography with the revelation of an at least sexual relationship with his slave Sally Hemmings and of the children that relationship produced, Couser argues for the intimate link between science and story. In his discussion of genetic screening, this argument grows sharper: "the language of genetic research often echoes that of an investigation. One commonly hears genes referred to as 'culprits.' . . . This approach...