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Observing Bioethics$

Renee C. Fox and Judith P. Swazey

Print publication date: 2008

Print ISBN-13: 9780195365559

Published to Oxford Scholarship Online: October 2011

DOI: 10.1093/acprof:oso/9780195365559.001.0001

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(p.341) Appendix The Acadia Institute Bioethics Project: Interviews and Advisory Committee Members

(p.341) Appendix The Acadia Institute Bioethics Project: Interviews and Advisory Committee Members

Source:
Observing Bioethics
Publisher:
Oxford University Press

Our initial proposal to the National Science Foundation (NSF) for the project entitled “Bioethics in American Society,” as we realized when it was submitted, was ambitious both in terms of its scope and in the number of interviews we planned to conduct as one of our sources of primary data and for archival deposition. Following the recommendations of the proposal's reviewers and our program officer at the NSF, we “downsized” the scope of the study and the number of interviews, bringing them more in line with the length of the project and funding for personnel and travel. As the reviewers also suggested, we formed a small advisory committee, whose members agreed, when requested, to review and comment on various aspects of our work as the study progressed. Near the end of the project, we convened the committee for a one-day meeting to discuss some of the major themes and findings that had emerged from our research, which we had articulated in short papers that we had prepared for this purpose and circulated in advance.

The interviews that we conducted constituted a type of social science research covered by the federal regulations for the protection of human research subjects, which required the review of our interview protocol and consent form by an institutional review board (IRB). Because the Acadia Institute, as a small freestanding research organization, did not have an IRB or an affiliation with an institutional IRB, we received permission to have the protocol and consent form reviewed by Dr. Robert J. Levine at Yale University School of Medicine, one of the country's leading authorities on human subjects research and IRBs. Dr. Levine recommended, and we adopted, several changes in the protocol and consent form, (p.342) which in turn were approved by the NSF. When we later received a publication support grant from the National Library of Medicine, after the interviews had been completed, the National Institutes of Health stipulated that funding was contingent on a review by a full IRB of the interview protocol, consent form, and use of interview materials in a book or other publications. At the principal investigator's request, that review was undertaken by the IRB at Eastern Maine Medical Center, which unanimously approved these materials.

We conducted a total of 45 face-to-face interviews, which ranged in length from 2 to over 10 hours. Prospective interviewees were sent an introductory letter about the project and the nature and purposes of the interviews, and a consent form, which they were asked to return if they were willing to meet with us. We took detailed field notes during the interviews, and all but two were tape-recorded and transcribed. After initial editing by project staff, the interviewees were sent a copy of their transcript for review and further editing and corrections, both for our use and for archival deposition. Those attending the day-long advisory committee meeting in September 2000 also were given the option of reviewing the edited transcript prepared by project staff, which most declined to do.

Project Interviewees and Advisory Committee Members

Judith Andre, PhD, Department of Philosophy and Center for Ethics and Humanities in the Life Sciences, Michigan State University

Date of interview: 9/15/98

Interviewer: Judith P. Swazey

George Annas, JD, MPH, Department of Health Law, Boston University School of Public Health*1

Date of interview:12/16/97

Interviewer: Judith P. Swazey

Margaret Battin, PhD, Department of Philosophy, University of Utah and Adjunct Professor, Division of Medical Ethics, University of Utah School of Medicine*

Date of interview: 6/23/98

Interviewer: Judith P. Swazey

Tom Beauchamp, PhD, Kennedy Institute of Ethics, Georgetown University*

Date of interview: 3/10/00

Interviewer: Judith P. Swazey

Baruch Brody, PhD, Center for Medical Ethics and Health Policy, Baylor University*

Date of interview: 11/19/98

Interviewer: Judith P. Swazey

Howard Brody, MD, PhD, Center for Ethics and Humanities in the Life Sciences, Michigan State University*

Date of interview: 9/14/98

Interviewer: Judith P. Swazey

(p.343) Daniel Callahan, PhD, The Hastings Center*

Date of interview: 5/11/00

Interviewer: Judith P. Swazey

Arthur Caplan, PhD, Center for Bioethics, University of Pennsylvania*

Dates of interviews: 10/15/97; 11/21/97; 1/16/98; 3/2/98; 5/24/99

Interviewers: Renée C. Fox and Judith P. Swazey; Renée C. Fox, Carla M. Messikomer, and Judith P. Swazey; Renée C. Fox and Carla M. Messikomer; Renée C. Fox and Carla M. Messikomer; Renée C. Fox and Carla M. Messikomer

Alexander M. Capron, LLB, Henry W. Bruce University Professor of Law and Medicine, The Law School, University of Southern California*

Date of interview: 6/17 and 6/18/98

Interviewer: Judith P. Swazey

Ronald Carson, PhD, Institute for Medical Humanities, University of Texas Galveston*

Date of interview: 11/18/98 and 6/15/99

Interviewers: Judith P. Swazey; Renée C. Fox and Judith P. Swazey

James Childress, PhD, Department of Religious Studies, University of Virginia*

Date of interview: 3/29/99

Interviewers: Renée C. Fox and Judith P. Swazey

K. Danner Clouser, PhD, Professor of Medical Humanities Emeritus, Hershey Medical School*

Date of interview: 12/17/98

Interviewers: Carla M. Messikomer and Judith P. Swazey

Bette Crigger, PhD, The Hastings Center*

Date of interview: 5/12/00

Interviewers: Carla M. Messikomer and Judith P. Swazey

Norman Daniels, PhD, Department of Philosophy, Tufts University*

Date of interview: 5/14/99

Interviewer: Judith P. Swazey

Elliot N. Dorff, PhD, Professor of Philosophy, University of Judaism*

Date of interview: 6/15/98

Interviewer: Judith P. Swazey

H. Tristram Engelhardt, MD, PhD, Center for Medical Ethics and Health Policy, Baylor University*

Date of interview: 6/14/99

Interviewers: Renée C. Fox and Judith P. Swazey

Ruth Faden, MPH, PhD, The Bioethics Institute, Johns Hopkins University*

Date of interview: 3/11/99

Interviewer: Judith P. Swazey

John Fletcher, PhD, Clinical Bioethics Program, University of Virginia*

Date of interview: 3/22/99

Interviewers: Renée C. Fox and Judith P. Swazey

(p.344) Norman Fost, MD, Program in Medical Ethics, University of Wisconsin School of Medicine*

Date of interview: 6/13/00

Interviewer: Judith P. Swazey

Leonard H. Glantz, JD, Associate Dean and Professor of Health Law, Boston University School of Public Health*

Date of interview: 12/15/97

Interviewer: Judith P. Swazey

James Gustafson, PhD, Woodruff Professor of Comparative Studies and Religion, Emeritus, Emory University

Date of interview: 6/17 and 6/18/99

Interviewer: Renée C. Fox and Judith P. Swazey

Albert R. Jonsen, STM, PhD, Department of Medical History and Ethics, University of Washington*

Date of interview: 6/19 and 6/22/98

Interviewer: Judith P. Swazey

Eric Juengst, PhD, Center for Biomedical Ethics, Case Western Reserve University*

Date of interview: 9/16/98

Interviewers: Carla M. Messikomer and Judith P. Swazey

Leon Kass, MD, PhD, Committee on Social Thought, University of Chicago*

Date of interview: 6/16/00

Interviewer: Judith P. Swazey

Patricia King, JD, The Law Center, Georgetown University*

Date of interview: 11/11/99

Interviewer: Judith P. Swazey

Ruth Macklin, PhD, Department of Epidemiology and Social Medicine, Albert Einstein College of Medicine*

Date of interview: 5/17/99

Interviewers: Renée C. Fox and Carla M. Messikomer

Patricia Marshall, PhD, Department of Medical Humanities, Loyola University*

Date of interview: 6/20/00

Interviewers: Carla M. Messikomer and Judith P. Swazey

Martin Marty, PhD, Fairfax M. Cone Distinguished Service Professor, University of Chicago*

Date of interview: 6/21/00

Interviewers: Carla M. Messikomer and Judith P. Swazey

Charles McCarthy, PhD, Office for Protection from Research Risks, NIH (Ret.), Richmond, Virginia*

Date of interview: 11/9/99

Interviewer: Judith P. Swazey

Glenn McGee, PhD, Center for Bioethics, University of Pennsylvania*

Date of interview: 11/18/97

Interviewers: Renée C. Fox, Carla M. Messikomer, and Judith P. Swazey

(p.345) Eric Meslin, PhD, National Bioethics Advisory Committee, Rockville, Md.*

Date of interviews: 3/19/98; 3/10/00

Interviewers: Carla M. Messikomer and Judith P. Swazey; Judith P. Swazey

Barbara Mishkin, JD, Hogan and Hartson, Washington, D.C.*

Date of interview: 3/18/98

Interviewers: Carla M. Messikomer and Judith P. Swazey

Thomas Murray, PhD, Center for Biomedical Ethics, Case Western Reserve University*

Date of interview: 11/20/98

Interviewer: Judith P. Swazey

Laurence O'Connell, PhD, STD, Park Ridge Center for the Study of Health, Faith, and Ethics*

Date of interview: 6/20/00

Interviewers: Carla M. Messikomer and Judith P. Swazey

Edmund Pellegrino, MD, Center for Clinical Bioethics, Georgetown University Medical Center

Date of interview: 3/25/99

Interviewers: Renée C. Fox and Judith P. Swazey

Warren Reich, STD, Georgetown University School of Medicine*

Date of interview: 3/29/00

Interviewer: Judith P. Swazey

Hon. Paul Rogers, JD, Hogan and Hartson, Washington, D.C.

Date of interview: 3/18/98

Interviewers: Carla M. Messikomer and Judith P. Swazey

Mark Siegler, MD, McClean Center for Clinical Ethics, University of Chicago Hospitals*

Date of interview: 6/15/00

Interviewer: Judith P. Swazey

Rob Streiffer, PhD, Program in Medical Ethics and Department of Philosophy, University of Wisconsin Madison*

Date of interview: 6/13/00

Interviewer: Judith P. Swazey

William Stubing, MDiv, The Greenwall Foundation

Date of interview: 5/10/99

Interviewers: Renée C. Fox and Carla M. Messikomer

Robert Veatch, PhD, Kennedy Institute of Ethics, Georgetown University*

Date of interviews: 3/26/99; 11/8/99

Interviewers: Renée C. Fox and Judith P. Swazey; Judith P. Swazey

LeRoy Walters, PhD, Kennedy Institute of Ethics, Georgetown University*

Date of interview: 3/13/00

Interviewer: Judith P. Swazey

Alan Weisbard, JD, Program in Medical Ethics, University of Wisconsin

Date of interview: 5/5/00

Interviewer: Judith P. Swazey

(p.346) James Wind, PhD, The Alban Institute, Bethesda, Md.*

Date of interview: 11/9/99

Interviewer: Judith P. Swazey

Stuart Youngner, MD, Center for Biomedical Ethics, Case Western Reserve University*

Date of interview: 9/17/98

Interviewers: Carla M. Messikomer and Judith P. Swazey

Project Advisory Committee, September 8, 2000, Meeting Transcript

Participants

Daniel Callahan, The Hastings Center

Arthur Caplan, Center for Bioethics, University of Pennsylvania

Howard Kaye, PhD, Franklin and Marshall College

Victor Lidz, PhD, MCP-Hahnemann School of Medicine

Ruth Macklin, PhD, Albert Einstein College of Medicine

Robert Veatch, PhD, Kennedy Institute of Ethics, Georgetown University

Project Investigators

Renée C. Fox, PhD, Annenberg Professor of the Social Sciences Emerita, University of Pennsylvania

Carla M. Messikomer, PhD, The Acadia Institute

Judith P. Swazey, PhD, The Acadia Institute

Guest

Rachelle Hollander, PhD, Program Director, Societal Dimensions of Engineering, Science, and Technology, National Science Foundation

Notes:

(1.) Transcripts of interviews marked with an *, and the transcript of the advisory committee meeting, are deposited at the National Reference Center for Bioethics Literature/ Kennedy Institute of Ethics Library. Six interviews were not deposited, for the following reasons: two were not taped due to a malfunction of the recording equipment, although detailed written field notes were taken; two individuals requested that their interviews not be deposited; one, in our judgment, did not have sufficient content to warrant deposition; and one person did not review his transcript.