Editors’ Note

This issue of Narrative Inquiry in Bioethics explores a range of bioethical topics through a narrative symposium, a case study, and a qualitative research article. The narrative symposium in this issue is edited by Thomas May, Richard M. Lee, and James P. Evans, and is titled, “Healthcare Challenges Faced by Adopted Persons Lacking Family Health History Information.” The symposium presents a collection of stories by adoptees, each detailing the author’s first-hand experience seeking health services without access to family health history. Family history may affect decisions to pursue genetic testing or aggressive screening for some conditions such as breast cancer. The authors describe a range of experiences regarding decision making in the absence of this information. Some were over-treated by physicians who, due to a lack of family health history, treated the storytellers as high-risk patients, while other authors had a diagnosis delayed because their symptoms were misinterpreted without family health history to raise suspicions. The symposium editors make the observation that the stories “illustrate the lack of medical professional consensus about how to approach this population.” The four commentary articles by Pat Lord, Kari Casas, Jennifer James, and Harold Grotevant offer important insights into the authors’ stories.

Erich M. Dress, Rosemary Frasso, Monica E. Calkins, Allison E. Curry, Christian G. Kohler, Lyndsay R. Schmidt, and Dominic A. Sisti contributed a research article to the issue titled Comparing Patient, Clinician, and Caregiver Perceptions of Care for Early Psychosis: A Free Listing Study. The researchers used free listing—a qualitative technique that asks respondents to list all the terms, values, or topics they can think of that relate to a particular domain—to explore and compare the views and experiences of early psychosis patients, caregivers, and clinicians. The authors found that the priorities, difficulties, and attitudes of the three groups are often not aligned. They suggest that, by taking into account the values of all stakeholders, informed decision-making and the treatment of early psychosis patients can be enhanced.

By exploring what we are willing to do, we demonstrate our commitments to what we value. However, our will can be influenced by our obligations and compulsions. The case study in this issue, The Will Reconsidered: Hard Choices in Living Organ Donation, discusses the experience of a father paralyzed by indecision. Confronted with the choice to donate a kidney to a life-long friend diagnosed with renal failure, the father must also consider potential obligations to his children in the case that they may someday need a kidney. The authors, Robert M. Guerin, Elizabeth O’Toole, and Barbara Daly, discuss how competing values can pull us in opposing directions and lead to indecision. How can living donor advocates help potential donors break through ambiguity while assuring they remain faithful to their commitments and values?

News about Narrative Inquiry in Bioethics

Narrative Inquiry in Bioethics would like to thank all of our new sponsors: the Bioethics Institute at Loyola Marymount University, the Neiswanger Institute for Bioethics at Loyola University Chicago, the Albert Gnaegi Center for Health Care Ethics at Saint Louis University, the Center for Humanities and Ethics at the University of Texas McGovern Medial School, the Bioethics Graduate Program and Center for Bioethics, Health and Society at Wake Forest University, and the Center for Clinical & Research Ethics at Washington University in St. Louis.

To become a sponsor, please contact us at narrative-bioethics@gmail.com.

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• • A rotating banner ad on the NIB website thanking your program as a sponsor and linking to your degree program if applicable.

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• • Access to educational materials that can be used in classrooms or discussion groups with ethics committee members, students, and healthcare workers.

For a list of current Calls for Stories and Author Guidelines, please visit http://nibjournal.org/submit/calls/.