When the first issue of Narrative Inquiry in Bioethics (NIB) was published, we received a lot of praise and a bit of anger. Someone affiliated with the journal threatened to cut ties because he felt the collection of stories on psychiatric hospitalization was not balanced or representative of the experiences of most patients today. He felt the stories over-represented negative experiences.
This made me very leery of collecting stories on living organ donation: because the decision to donate can save a life, the matter is rarely addressed in a cool, neutral fashion; if our collection of stories was viewed as unbalanced, it would surely attract wrath. It also made me wonder: What does it mean to collect a representative set of stories on a topic such as living organ donation?
In the Editors’ Introduction to issue 2.1, we address this question. In short, we argue that a set of stories might represent a broad “range of experiences, but not the frequency of experiences.” The difference between range and frequency is illustrated in any distribution curve. In the figure below, the baseline represents the range of heights of men in the US, the vertical line represents the frequency.
Given that our stories cannot be gathered randomly and that we are limited to a “sample” of 12 or so, we effectively present a flat line or a continuum; we represent the range of experiences, but not how often people have such experiences. Thus, for example, in the issue on living organ donation, we went to great pains to share stories that were positive, negative and mixed; stories involving successful transplants and unsuccessful transplants; liver and kidney donations; and related and unrelated donors.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.