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Narrative Inquiry in Bioethics

Vol. 1 (2011) through current issue

Narrative Inquiry in Bioethics (NIB) provides a forum for exploring current issues in bioethics through the publication and analysis of personal stories, qualitative and mixed-methods research articles, and case studies. Articles may address the experiences of patients and research participants, as well as health care workers and researchers. NIB is dedicated to fostering a deeper understanding of bioethical issues by engaging rich descriptions of complex human experiences. While NIB upholds appropriate standards for narrative inquiry and qualitative research, it seeks to publish articles that will appeal to a broad readership of health care providers and researchers, bioethicists, sociologists, policy makers, and others.

Published by: The Johns Hopkins University Press


E-ISSN: 2157-1740
Print ISSN: 2157-1732

Editorial Board

Volume 5, Number 1, Spring 2015

Editors

James M. DuBois, PhD, DSc
Professor of Medicine, Washington University in St. Louis

Ana S. Iltis, PhD
Center for Bioethics, Health, and Society, Wake Forest University

Associate Editor for Research Articles

Emily Anderson, PhD, MPH
Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine

Managing Editor

Susan DuBois, MA
Foundation for Narrative Inquiry in Bioethics, St. Louis, MO

Director of Community Engagement

Gigi McMillan, BA
Patient Advocate/Research Subject Advocate

Editorial Board

Dan Bustillos, JD, PhD
Albert Gnaegi Center for Health Care Ethics, Saint Louis University

Tod Chambers, PhD
Medical Humanities & Bioethics Program, Northwestern University

Rita Charon, MD, PhD
Department of Medicine, College of Physicians & Surgeons of Columbia University

Raymond De Vries, PhD
Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School

Renee Fox, PhD
Department of Sociology, University of Pennsylvania

Arthur W. Frank, PhD
Department of Sociology, University of Calgary

Elisa Gordon, PhD, MPH
Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University

Amy Haddad, PhD, MSN
Center for Health Policy and Ethics, Creighton University Medical Center

Anne Hudson Jones, PhD
The Institute for the Medical Humanities, University of Texas Medical Branch

Barbara A. Koenig, PhD
Department of Social & Behavioral Sciences Institute for Health and Aging, University of California, San Francisco

Charles Lidz, PhD
Center for Mental Health Services Research, University of Massachusetts

Hilde Lindemann, PhD
Department of Philosophy, Michigan State University

Martha Montello, PhD
Department of History and Philosophy of Medicine, University of Kansas Medical Center

Kathryn Montgomery, PhD
Medical Humanities & Bioethics, Northwestern University

Eric Racine, PhD
Neuroethics Research Unit, Institut de recherches cliniques de Montréal,
Université de Montréal, and McGill University

Laura Roberts, MD
Department of Psychiatry & Behavioral Sciences, Stanford University

Cynda Hylton Rushton PhD, RN, FAAN
Berman Institute of Bioethics, Johns Hopkins University

Martin L. Smith, STD
Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic

Jeffrey P. Spike, PhD
The John P. McGovern, M.D. Center For Health, Humanities, and The Human
Spirit, The University of Texas Health Science Center at Houston

Jeremy Sugarman, MD, MPH, MA
Berman Institute of Bioethics, Johns Hopkins University

Laurie Zoloth, PhD
Center for Bioethics, Science and Society, Northwestern University

Volume 5, Number 1A, 2015

Editors

James M. DuBois, PhD, DSc
Professor of Medicine, Washington University in St. Louis

Ana S. Iltis, PhD
Center for Bioethics, Health, and Society, Wake Forest University

Associate Editor for Research Articles

Emily Anderson, PhD, MPH
Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine

Managing Editor

Susan DuBois, MA
Foundation for Narrative Inquiry in Bioethics, St. Louis, MO

Director of Community Engagement

Gigi McMillan, BA
Patient Advocate/Research Subject Advocate

Editorial Board

Dan Bustillos, JD, PhD
Albert Gnaegi Center for Health Care Ethics, Saint Louis University

Tod Chambers, PhD
Medical Humanities & Bioethics Program, Northwestern University

Rita Charon, MD, PhD
Department of Medicine, College of Physicians & Surgeons of Columbia University

Raymond De Vries, PhD
Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School

Renee Fox, PhD
Department of Sociology, University of Pennsylvania

Arthur W. Frank, PhD
Department of Sociology, University of Calgary

Elisa Gordon, PhD, MPH
Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University

Amy Haddad, PhD, MSN
Center for Health Policy and Ethics, Creighton University Medical Center

Anne Hudson Jones, PhD
The Institute for the Medical Humanities, University of Texas Medical Branch

Barbara A. Koenig, PhD
Department of Social & Behavioral Sciences Institute for Health and Aging, University of California, San Francisco

Charles Lidz, PhD
Center for Mental Health Services Research, University of Massachusetts

Hilde Lindemann, PhD
Department of Philosophy, Michigan State University

Martha Montello, PhD
Department of History and Philosophy of Medicine, University of Kansas Medical Center

Kathryn Montgomery, PhD
Medical Humanities & Bioethics, Northwestern University

Eric Racine, PhD
Neuroethics Research Unit, Institut de recherches cliniques de Montréal,
Université de Montréal, and McGill University

Laura Roberts, MD
Department of Psychiatry & Behavioral Sciences, Stanford University

Cynda Hylton Rushton PhD, RN, FAAN
Berman Institute of Bioethics, Johns Hopkins University

Martin L. Smith, STD
Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic

Jeffrey P. Spike, PhD
The John P. McGovern, M.D. Center For Health, Humanities, and The Human
Spirit, The University of Texas Health Science Center at Houston

Jeremy Sugarman, MD, MPH, MA
Berman Institute of Bioethics, Johns Hopkins University

Laurie Zoloth, PhD
Center for Bioethics, Science and Society, Northwestern University

Volume 4, Number 3, Winter 2014

Editors

James M. DuBois, PhD, DSc
Professor of Medicine, Washington University in St. Louis

Ana S. Iltis, PhD
Center for Bioethics, Health, and Society, Wake Forest University

Associate Editor for Research Articles

Emily Anderson, PhD, MPH
Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine

Managing Editor

Susan DuBois, MA
Foundation for Narrative Inquiry in Bioethics, St. Louis, MO

Director of Community Engagement

Gigi McMillan, BA
Patient Advocate/Research Subject Advocate

Editorial Board

Dan Bustillos, JD, PhD
Albert Gnaegi Center for Health Care Ethics, Saint Louis University

Tod Chambers, PhD
Medical Humanities & Bioethics Program, Northwestern University

Rita Charon, MD, PhD
Department of Medicine, College of Physicians & Surgeons of Columbia University

Raymond De Vries, PhD
Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School

Renee Fox, PhD
Department of Sociology, University of Pennsylvania

Arthur W. Frank, PhD
Department of Sociology, University of Calgary

Elisa Gordon, PhD, MPH
Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University

Amy Haddad, PhD, MSN
Center for Health Policy and Ethics, Creighton University Medical Center

Anne Hudson Jones, PhD
The Institute for the Medical Humanities, University of Texas Medical Branch

Barbara A. Koenig, PhD
Department of Social & Behavioral Sciences Institute for Health and Aging, University of California, San Francisco

Charles Lidz, PhD
Center for Mental Health Services Research, University of Massachusetts

Hilde Lindemann, PhD
Department of Philosophy, Michigan State University

Martha Montello, PhD
Department of History and Philosophy of Medicine, University of Kansas Medical Center

Kathryn Montgomery, PhD
Medical Humanities & Bioethics, Northwestern University

Eric Racine, PhD
Neuroethics Research Unit, Institut de recherches cliniques de Montréal,
Université de Montréal, and McGill University

Laura Roberts, MD
Department of Psychiatry & Behavioral Sciences, Stanford University

Cynda Hylton Rushton PhD, RN, FAAN
Berman Institute of Bioethics, Johns Hopkins University

Martin L. Smith, STD
Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic

Jeffrey P. Spike, PhD
The John P. McGovern, M.D. Center For Health, Humanities, and The Human
Spirit, The University of Texas Health Science Center at Houston

Jeremy Sugarman, MD, MPH, MA
Berman Institute of Bioethics, Johns Hopkins University

Laurie Zoloth, PhD
Center for Bioethics, Science and Society, Northwestern University

Volume 4, Number 2, Summer 2014

Editors

James M. DuBois, PhD, DSc
Professor of Medicine, Washington University in St. Louis

Ana S. Iltis, PhD
Center for Bioethics, Health, and Society, Wake Forest University

Associate Editor for Research Articles

Emily Anderson, PhD, MPH
Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine

Managing Editor

Susan DuBois, MA
Foundation for Narrative Inquiry in Bioethics, St. Louis, MO

Editorial Board

Dan Bustillos, JD, PhD
Albert Gnaegi Center for Health Care Ethics, Saint Louis University

Tod Chambers, PhD
Medical Humanities & Bioethics Program, Northwestern University

Rita Charon, MD, PhD
Department of Medicine, College of Physicians & Surgeons of Columbia University

Raymond De Vries, PhD
Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School

Renee Fox, PhD
Department of Sociology, University of Pennsylvania

Arthur W. Frank, PhD
Department of Sociology, University of Calgary

Elisa Gordon, PhD, MPH
Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University

Amy Haddad, PhD, MSN
Center for Health Policy and Ethics, Creighton University Medical Center

Anne Hudson Jones, PhD
The Institute for the Medical Humanities, University of Texas Medical Branch

Barbara A. Koenig, PhD
Department of Social & Behavioral Sciences Institute for Health and Aging, University of California, San Francisco

Charles Lidz, PhD
Center for Mental Health Services Research, University of Massachusetts

Hilde Lindemann, PhD
Department of Philosophy, Michigan State University

Gigi McMillan, BA
Patient Advocate/Research Subject Advocate

Martha Montello, PhD
Department of History and Philosophy of Medicine, University of Kansas Medical Center

Kathryn Montgomery, PhD
Medical Humanities & Bioethics, Northwestern University

Eric Racine, PhD
Neuroethics Research Unit, Institut de recherches cliniques de Montréal,
Université de Montréal, and McGill University

Laura Roberts, MD
Department of Psychiatry & Behavioral Sciences, Stanford University

Cynda Hylton Rushton PhD, RN, FAAN
Berman Institute of Bioethics, Johns Hopkins University

Martin L. Smith, STD
Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic

Jeffrey P. Spike, PhD
The John P. McGovern, M.D. Center For Health, Humanities, and The Human
Spirit, The University of Texas Health Science Center at Houston

Jeremy Sugarman, MD, MPH, MA
Berman Institute of Bioethics, Johns Hopkins University

Laurie Zoloth, PhD
Center for Bioethics, Science and Society, Northwestern University

Volume 2, Number 2, Fall 2012



Editor Board

Emily Anderson, PhD, MPH, Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine


Dan Bustillos, JD, PhD, Albert Gnaegi Center for Health Care Ethics, Saint Louis University


Tod Chambers, PhD, Medical Humanities & Bioethics Program, Northwestern University


Rita Charon, MD, PhD, Department of Medicine, College of Physicians & Surgeons of Columbia University


Raymond De Vries, PhD, Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School


Renee Fox, PhD, Sociology, University of Pennsylvania


Elisa Gordon, PhD, MPH, Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine Northwestern University


Amy Haddad, PhD, MSN, Center for Health Policy and Ethics, Creighton University Medical Center


Anne Hudson Jones, PhD, The Institute for the Medical Humanities, University of Texas Medical Branch


Barbara A. Koenig, PhD, Department of Social & Behavioral Sciences Institute for Health and Aging University of California, San Francisco


Charles Lidz, PhD, Center for Mental Health Services Research, University of Massachusetts


Hilde Lindemann, PhD, Department of Philosophy, Michigan State University


Martha Montello, PhD, Department of History and Philosophy of Medicine, University of Kansas Medical Center


Kathryn Montgomery, PhD, Medical Humanities & Bioethics, Northwestern University


Laura Roberts, Department of Psychiatry & Behavioral Sciences, Stanford University


Cynda Hylton Rushton PhD,RN, FAAN, Berman Institute of Bioethics, Johns Hopkins University


Martin L. Smith, STD, Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic


Jeffrey P. Spike, PhD, The John P. McGovern, M.D. Center For Health, Humanities, and The Human Spirit, The University of Texas Health Science Center at Houston


Jeremy Sugarman, MD, MPH, MA, Berman Institute of Bioethics, Johns Hopkins University


Laurie Zoloth, PhD, Center for Bioethics, Science and Society, Northwestern University

Volume 2, Number 1, Spring 2012



Editor Board

Emily Anderson, PhD, MPH, Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine


Dan Bustillos, JD, PhD, Albert Gnaegi Center for Health Care Ethics, Saint Louis University


Tod Chambers, PhD, Medical Humanities & Bioethics Program, Northwestern University


Rita Charon, MD, PhD, Department of Medicine, College of Physicians & Surgeons of Columbia University


Raymond De Vries, PhD, Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School


Renee Fox, PhD, Sociology, University of Pennsylvania


Elisa Gordon, PhD, MPH, Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine Northwestern University


Amy Haddad, PhD, MSN, Center for Health Policy and Ethics, Creighton University Medical Center


Anne Hudson Jones, PhD, The Institute for the Medical Humanities, University of Texas Medical Branch


Barbara A. Koenig, PhD, Department of Social & Behavioral Sciences Institute for Health and Aging University of California, San Francisco


Charles Lidz, PhD, Center for Mental Health Services Research, University of Massachusetts


Hilde Lindemann, PhD, Department of Philosophy, Michigan State University


Martha Montello, PhD, Department of History and Philosophy of Medicine, University of Kansas Medical Center


Kathryn Montgomery, PhD, Medical Humanities & Bioethics, Northwestern University


Laura Roberts, Department of Psychiatry & Behavioral Sciences, Stanford University


Cynda Hylton Rushton PhD,RN, FAAN, Berman Institute of Bioethics, Johns Hopkins University


Martin L. Smith, STD, Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic


Jeffrey P. Spike, PhD, The John P. McGovern, M.D. Center For Health, Humanities, and The Human Spirit, The University of Texas Health Science Center at Houston


Jeremy Sugarman, MD, MPH, MA, Berman Institute of Bioethics, Johns Hopkins University


Laurie Zoloth, PhD, Center for Bioethics, Science and Society, Northwestern University

Volume 1, Number 3, Winter 2011



Editor Board

Emily Anderson, PhD, MPH, Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine


Dan Bustillos, JD, PhD, Albert Gnaegi Center for Health Care Ethics, Saint Louis University


Tod Chambers, PhD, Medical Humanities & Bioethics Program, Northwestern University


Rita Charon, MD, PhD, Department of Medicine, College of Physicians & Surgeons of Columbia University


Raymond De Vries, PhD, Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School


Renee Fox, PhD, Sociology, University of Pennsylvania


Elisa Gordon, PhD, MPH, Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine Northwestern University


Amy Haddad, PhD, MSN, Center for Health Policy and Ethics, Creighton University Medical Center


Anne Hudson Jones, PhD, The Institute for the Medical Humanities, University of Texas Medical Branch


Barbara A. Koenig, PhD, Department of Social & Behavioral Sciences Institute for Health and Aging University of California, San Francisco


Charles Lidz, PhD, Center for Mental Health Services Research, University of Massachusetts


Hilde Lindemann, PhD, Department of Philosophy, Michigan State University


Martha Montello, PhD, Department of History and Philosophy of Medicine, University of Kansas Medical Center


Kathryn Montgomery, PhD, Medical Humanities & Bioethics, Northwestern University


Laura Roberts, Department of Psychiatry & Behavioral Sciences, Stanford University


Cynda Hylton Rushton PhD,RN, FAAN, Berman Institute of Bioethics, Johns Hopkins University


Martin L. Smith, STD, Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic


Jeffrey P. Spike, PhD, The John P. McGovern, M.D. Center For Health, Humanities, and The Human Spirit, The University of Texas Health Science Center at Houston


Jeremy Sugarman, MD, MPH, MA, Berman Institute of Bioethics, Johns Hopkins University


Laurie Zoloth, PhD, Center for Bioethics, Science and Society, Northwestern University

Volume 1, Number 2, Fall 2011



Editor Board

Emily Anderson, PhD, MPH, Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine


Dan Bustillos, JD, PhD, Albert Gnaegi Center for Health Care Ethics, Saint Louis University


Tod Chambers, PhD, Medical Humanities & Bioethics Program, Northwestern University


Rita Charon, MD, PhD, Department of Medicine, College of Physicians & Surgeons of Columbia University


Raymond De Vries, PhD, Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School


Renee Fox, PhD, Sociology, University of Pennsylvania


Elisa Gordon, PhD, MPH, Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine Northwestern University


Amy Haddad, PhD, MSN, Center for Health Policy and Ethics, Creighton University Medical Center


Anne Hudson Jones, PhD, The Institute for the Medical Humanities, University of Texas Medical Branch


Barbara A. Koenig, PhD, Department of Social & Behavioral Sciences Institute for Health and Aging University of California, San Francisco


Charles Lidz, PhD, Center for Mental Health Services Research, University of Massachusetts


Hilde Lindemann, PhD, Department of Philosophy, Michigan State University


Martha Montello, PhD, Department of History and Philosophy of Medicine, University of Kansas Medical Center


Kathryn Montgomery, PhD, Medical Humanities & Bioethics, Northwestern University


Laura Roberts, Department of Psychiatry & Behavioral Sciences, Stanford University


Cynda Hylton Rushton PhD,RN, FAAN, Berman Institute of Bioethics, Johns Hopkins University


Martin L. Smith, STD, Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic


Jeffrey P. Spike, PhD, The John P. McGovern, M.D. Center For Health, Humanities, and The Human Spirit, The University of Texas Health Science Center at Houston


Jeremy Sugarman, MD, MPH, MA, Berman Institute of Bioethics, Johns Hopkins University


Laurie Zoloth, PhD, Center for Bioethics, Science and Society, Northwestern University

Volume 1, Number 1, Spring 2011



Editor Board

Emily Anderson, PhD, MPH, Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine


Dan Bustillos, JD, PhD, Albert Gnaegi Center for Health Care Ethics, Saint Louis University


Tod Chambers, PhD, Medical Humanities & Bioethics Program, Northwestern University


Rita Charon, MD, PhD, Department of Medicine, College of Physicians & Surgeons of Columbia University


Raymond De Vries, PhD, Bioethics Program, the Department of Obstetrics and Gynecology, and the Department of Medical Education, University of Michigan Medical School


Renee Fox, PhD, Sociology, University of Pennsylvania


Elisa Gordon, PhD, MPH, Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine Northwestern University


Amy Haddad, PhD, MSN, Center for Health Policy and Ethics, Creighton University Medical Center


Anne Hudson Jones, PhD, The Institute for the Medical Humanities, University of Texas Medical Branch


Barbara A. Koenig, PhD, Department of Social & Behavioral Sciences Institute for Health and Aging University of California, San Francisco


Charles Lidz, PhD, Center for Mental Health Services Research, University of Massachusetts


Hilde Lindemann, PhD, Department of Philosophy, Michigan State University


Martha Montello, PhD, Department of History and Philosophy of Medicine, University of Kansas Medical Center


Kathryn Montgomery, PhD, Medical Humanities & Bioethics, Northwestern University


Laura Roberts, Department of Psychiatry & Behavioral Sciences, Stanford University


Cynda Hylton Rushton PhD,RN, FAAN, Berman Institute of Bioethics, Johns Hopkins University


Martin L. Smith, STD, Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic


Jeffrey P. Spike, PhD, The John P. McGovern, M.D. Center For Health, Humanities, and The Human Spirit, The University of Texas Health Science Center at Houston


Jeremy Sugarman, MD, MPH, MA, Berman Institute of Bioethics, Johns Hopkins University


Laurie Zoloth, PhD, Center for Bioethics, Science and Society, Northwestern University

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