A commentary on a special report, titled Narrative Ethics: The Role of Stories in Bioethics, that appeared with the January‐February 2014 issue.

When I heard that a laboratory in China had cloned two long‐tailed macaques, I thought of Mary Shelley's novel Frankenstein. When academics write about the novel, many point out that the reason the creature becomes a “monster” is not that he has any inherently evil qualities but that Victor Frankenstein, the creature's “mother,” immediately rejects him. All later problems can be traced to the fact that Frankenstein does not take responsibility for his creation. While I do not disagree with this, (...) we need to think beyond (or before) Frankenstein's rejection to the reason he rejects it. I would like to suggest that this reason reveals something about how bioethics judges new biological technologies. I suggest that what causes Frankenstein to feel revulsion toward his creation is its unsettling mix of the beautiful and the ugly. (shrink)

The authors of “A Conceptual Model for the Translation of Bioethics Research and Scholarship” argue that bioethics must respond to institutional pressures by demonstrating that it is having an impact in the world. Any impact, the authors observe, must be “informed” by the goals of the discipline of bioethics. The concept of bioethics as a discipline is central to their argument. They begin by citing an essay that Daniel Callahan wrote in the first issue of Hastings Center Studies. Callahan argued (...) in this 1973 piece that bioethics had yet to attain the status of a discipline, and he lauded the freedom of being able to define a new discipline. Callahan's essay shares with Mathews and colleague's a peculiarity: neither ever defines what it means to refer to something as a “discipline.” To define a discipline does mean attending to the intended end product of scholarly activity, so I concur with Mathews et al.’s focus on outcomes. But I am concerned that in their argument they confusingly entangle their understanding of an academic discipline's internal goals, its telos, with its potential to have an impact on the external world, its praxis. The confusion that this can bring exposes what I believe is a profound problem within bioethics, the discipline's peculiar and at times intellectually hazardous relationship with its institutional hosts. (shrink)

Can one publish a bioethics case ethically? I suspect that most in bioethics would feel comfortable publishing a case if the subject—the patient—gave explicit permission, the amount of biographical information revealed was under the control of the subject, and the subject fully understood the benefits and risks of publishing the case. Some might add that the subject should have a chance to approve the final representation. I think that the ethics of publishing cases needs to be rethought. And this rethinking (...) needs to be focused not on the way publishing a case might harm a patient (that is, nonmaleficence) but, rather, on how a case presentation does not convey the patient’s own voice in the narrative (that is, respect for autonomy). Bioethics needs a new model of case presentation: the polyphonic case, which demands that the subject be a part of the case’s construction. (shrink)