This issue of Narrative Inquiry in Bioethics engages a series of compelling questions through a narrative symposium, a case study, and two qualitative research articles.
How does one’s own experience of illness affect the way one thinks about bedside ethics or the way one performs ethics consultations? The narrative symposium edited by Tod Chambers, “Taking Bioethics Personally,” presents a collection of stories by bioethicists about their personal experiences of illness and how these experiences affected how they practice bioethics. This symposium asks clinical bioethicists, who are accustomed to facilitating ethical discussions at the bedside of strangers, to examine how their own experience of illness and of the healthcare system changed the way they think about healthcare and healthcare ethics. In his commentary article, Bradley Lewis observes how the stories quickly broke down “the binary of personal and professional” and led him reflect on how he will deal with his own impairments and eventual demise. Again, we see the power of narrative approaches in bioethics to foster deep reflection and even wisdom as abstract questions in bioethics are transformed into existential questions.
Should a healthcare provider honor parental requests to refrain from telling an intelligent adolescent her diagnosis and terminal prognosis? Erica Salter engages this question as she relates her experiences as a clinical ethicist serving a family in a situation that is so difficult that one feels empathy for everyone involved. The case raises a series of difficult legal and ethical questions about the rights of terminally ill minors and of the parents who care for them, as well as the responsibilities of pediatric healthcare workers who may have very strong convictions that conflict with those of parents.
What can research regulators learn from qualitative studies on how institutional review board members and research participants make decisions regarding the risks and benefits of participating in a study? The article by Ann Freeman Cook, Helena Hoas, and Jane Clare Joyner shares data from two studies recently completed by their team and draws conclusions that may inform current debates about possible revisions to federal research regulations.
Do patients reliably know why their physicians admitted them to the hospital? Zackary Berger, Anne Dembitzer, and Mary Catherine Beach interviewed patients and compared their understanding of why they were admitted to information found in their medical charts. Nearly half of all patients interviewed did not express a proper understanding of the reasons for their admission, which raises a whole series of new questions about effective communication and the quality of informed consent for a treatment option that is frequently expensive and burdensome.
News about Narrative Inquiry in Bioethics
We recently received news that Narrative Inquiry in Bioethics received Honorable Mention in the 2012 PROSE Award’s category of Best New Journal in Science, Technology, and Medicine. We thank the Johns Hopkins University Press, our Editorial Board, our sponsors, our peer reviewers, and all of our authors for making this possible. [End Page v]
We are also pleased to announce that we received a gift from the BF Charitable Foundation to support operations and promote subscriptions. We thank the Foundation for its generous support.
As a first step in our promotional campaign, we are working with the Johns Hopkins University Press to develop a new website for Narrative Inquiry in Bioethics. This new website will provide an attractive and user-friendly platform for those who wish to access the journal online, learn about current calls for stories, identify creative uses for our published materials (in the classroom, in research, and in policy work), or find our guidelines for authors.
The promotion campaign is inspired by the conviction that—even as libraries tighten their budgets and focus on electronic journal packages—it is possible to build a loyal readership, a group of individual subscribers who await the next issue. Watch for an exciting pricing experiment by the Johns Hopkins University Press targeting individual readers! [End Page vi]