The response has been especially heartening because this year, for the first time, we are charging a fee of $300. For its first two years, the workshop was funded by the U.S. Department of Education's Fund for the Improvement of Postsecondary Education (FIPSE), IU's research division and the Poynter Center. When the project grant ran out last year, the Committee for Institutional Cooperation (CIC) and its member universities dug into their pockets for continuation funding. We are highly gratified by that ringing vote of confidence.
The aim of the workshop, directed by Research Associate Kenneth D. Pimple, is to help university science faculty to incorporate research ethics into their graduate courses. The 1997 workshop, shortened from six days to four, will meet June 25-28. The last day of the workshop (Saturday, June 28) will be open to the public. Featured will be presentations on "Model Curricula in Research Ethics" and "Alternatives to Animal Use in Education, Research, and Testing." There is no fee for the presentations on model curricula; the fee for the alternatives seminar is $50 (waived for workshop participants). Registration is required for both meetings.
Details on the TRE workshop and the two Saturday meetings, including the exact workshop schedule, can be found at the TRE home page (http://www.indiana.edu/~poynter/tre.html). If you want to be added to the TRE mailing list and receive a flier, let Ken know. You can reach him at 812/855-0261 or pimple@indiana.edu.
In addition to running the TRE project, Ken has been spreading the gospel of research ethics at a full schedule of meetings from coast to coast across the nation -- and even beyond our shores, taking the show across the Atlantic to Norway.
In the past year or so, Ken has given presentations on various aspects of the Teaching Research Ethics project at the national meeting of Public Responsibility in Medicine and Research (PRIM&R) in San Diego; the Annual Meeting of the Association for Practical and Professional Ethics in Saint Louis; and for the National Committee for Research Ethics in the Social Sciences and the Humanities, Oslo. While in Oslo, Ken also presented a talk on "Defining Misconduct in Science: Some Reflections on the American Experience." Faculty from the University of Oslo attended both presentations.
He has also given a lengthy list of invited presentations: "A Few Key Issues in Research Ethics," a plenary address to the Whitaker Foundation Biomedical Engineering Research Conference, Snowbird, Utah; "Teaching the Responsible Management of Scientific Data," Michigan State University Campus-Wide Symposium on Access, Control, and Management of Data, East Lansing; "Mixed Messages and Straight Talk: The Importance of Teaching the Responsible Conduct of Science," American College of Sports Medicine Northwest Region Annual Conference, Corvallis, Oregon.
In addition to all those lectures, Ken served on the Oversight Committee for a Planning Meeting for a Guide to Education in Responsible Science of the National Research Council. He gave two presentations to the Committee in February, the first on using case studies and the second on assessment of student learning in the responsible conduct of science.
We propose to conduct a series of 25 interviews with residents of Paoli, Indiana, a town of about 4000 that lies about 40 miles south of Bloomington. We are asking our respondents to tell us about their experiences with the deaths of friends and family members, their attitudes toward their own impending deaths and their relationships with professional care givers.
On November 1, we began re-interviewing respondents who had participated in a community study of Paoli, which was conducted by Oral History in the late 1980s. This resource is providing a rich context for the present study. We have received a warm welcome from the people of Paoli, and we have now completed 20 interviews with 21 individuals (including one husband- wife twofer). Twelve of our respondents are men, and nine are women. They range in age from 27 to 98 with a median age of 54. We don't pretend that they represent a cross-section of American society: All are white, all are Protestant, and the group as a whole is well-educated. They include teachers and school administrators, farmers, retail store owners, funeral directors, a writer, a social worker and several retirees.
We have begun very preliminary siftings of our transcripts in an effort to discern trends or patterns in the responses that -- we hope -- will enable us to draw some conclusions. A few themes are apparent, based on our review of approximately half the interviews.
Contrary to our initial expectations, our respondents have not expressed a lot of concern about pain or other symptoms, which, they believe, usually can be controlled by physicians. Much more worrying was the prospect of prolonged disability and dependence, becoming a burden to family members and care givers. Many agreed that lingering in a debilitated condition was worse than death, particularly when one believes -- as many of them do -- in an afterlife. They agree that medical technology should not be used to prolong a life inappropriately.
Our respondents described crucial support at the time of a death from the community, the church, their own religious beliefs and familiar professionals, including physicians or other professional care givers and funeral directors. Many stressed the importance of funerals as a way of bringing formal closure to a life.
Although many respondents were aware of living wills or other forms of advance directives, few had availed themselves of these options. They reported that their families had great difficulty in discussing death candidly, but they were grateful to loved ones who had made known their wishes regarding treatment.
Many respondents expressed deep gratitude for the care provided by physicians who had long-established relationships with their loved ones. On the other hand, they acknowledged the advantages of advanced care that might be sought outside the community, from specialists who were strangers.
As a small thank-you to the community, Ken Pimple found us a satellite location at the South Central Area Vocational School at Rego, a few miles south of Paoli, and we sponsored a teleconference on April 16 produced by the Hospice Foundation of America. The topic was "Living with Grief: When Illness Is Prolonged," and the audience primarily consisted of health care givers and members of the clergy.
On April 29, with supplementary funding from the Indiana Humanities Committee, we sponsored a public town meeting in Paoli. The event was designed to provide a forum for us to report our very preliminary findings to the community and to seek their feedback.
In addition to audiotapes and transcripts, which are archived at the Oral History Research Center, the project will produce a monograph and a series of materials to be distributed on the World Wide Web.
The workshop is designed to prepare leaders of the next generation of scientists and engineers to confront significant issues in research ethics. The goal is to help participants gain a conceptual understanding of research ethics and ethical thinking and an awareness of the ethical literature that informs these approaches. Workshop sessions will explore the historical context in which concern for scientific misconduct has developed as well as variations in conventions and research ethics expectations among differing disciplines.
Participants were asked to prepare in advance by reading in ethical theory, historical material in research ethics and current discussions and guidelines in research ethics. Each participant will draft a case raising issues in research ethics. During the workshop, participants will develop their capacity to recognize and analyze ethical issues in research situations and to apply moral principles and concepts to such situations. They will be assigned additional readings, engage in discussion of case studies and further refine their own cases under the direction of workshop faculty.
Presentations will include "The Nazi Doctors: Significance for the Ethics of Scientific Research," Robert Proctor, Pennsylvania State University; "Social /Historical Context of Engineering Ethics," Taft Broome, Howard University; "Statistical Analysis and the Responsible Use of Data," David DeMets, University of Wisconsin-Madison; "Impact of Science and Technology on the Environment," Aarne Vesilind, Duke; "Computers, Ethics and Social Values" and "Ethical Issues in the Mentor-Student Relation," Deborah Johnson, Rensselaer Polytechnic Institute; "Owning Scientific Information" and "Standards of Conduct in the Sciences and Variations in Conventions," Vivian Weil, Illinois Institute of Techn.PCase Studies in Research Ethics," Karen Muskavitch, Indiana University; "Conflict of Interest" and "Teaching Research Ethics," Michael Pritchard, Western Michigan University; and "Ethical Theory Underlying Research on Human Subjects," Brian Schrag, APPE.
APPE has published fifteen cases prepared by last year's participants, along with faculty commentaries. The cases, available from APPE, explore topics including mentor-student relations, whistle-blowing, ownership of knowledge, intellectual contribution and human subjects research.
The conference is designed for anyone interested in practical or professional ethics -- lay persons who are concerned about ethical issues in society, professors who may wish to incorporate ethics into their existing courses, thoughtful professionals who want to explore the ethical issues they face in their practice and ethicists who are looking for new ideas. The conference will address the needs of each group and will provide an opportunity for participants to associate with colleagues who share these interests.
"Ethics in the Professions and Practice" is organized around a series of four-day workshops, each meeting for two hours each day. Topics and seminar leaders are as follows:
"Reasonable Children," Mike Pritchard, Director for the Study of Ethics in Society, Western Michigan University
"Business Ethics: Practice and Pedagogy," Pat Werhane, Ruffin Professor of Business Ethics, University of Virginia
"Ethical Issues in Conducting and Reporting Research," Stephanie Bird, MIT, editor, Journal of Science and Engineering Ethics
"Ethics and the Internet: Privacy, Property, Accountability and Democracy," Deborah Johnson, Science and Technology Studies, Rensselaer Polytechnic Institute
"Who Should Set the Election Agenda: People, Polls or Press?" Marty Linsky, Public Policy, Harvard University
"Narratives, Case Studies and Theories in Ethics," John Arras, Philosophy, University of Virginia
"Medical Ethics," Ronald Carson, Kempner Professor and Director, Institute for the Medical Humanities, University of Texas Medical Branch
"Autonomy and Coercion in Public Health," Bruce Jennings, Executive Director, The Hastings Center
"Religion and the Professions," David H. Smith, Professor of Religious Studies and Director, Poynter Center for the Study of Ethics and American Institutions, IU.
"Case-Based Teaching," David Ozar, Professor and Co-Director, Graduate Programs in Health Care Ethics, Loyola University
"Ethics in the Academy," Brian Schrag, Executive Secretary, APPE
"Current Research on Teaching Professional Ethics," Muriel J. Bebeau, Education Director, Center for the Study of Ethical Development, University of Minnesota.
The conference will convene on August 3 with a banquet and keynote address by Ira Byock, M.D., President of the American Academy of Hospice and Palliative Medicine. Dr. Byock will speak on "The Ethics of Care at the End of Life." In addition to the seminars, plenary sessions open to all participants will feature lectures, discussions or demonstrations. Participants also will have an opportunity to present their own work.
For those who wish to combine the conference with a vacation, spectacular Glacier National Park and Yellowstone National Park are less than a day's drive from Missoula. Whitewater rafting is available, and the area offers some of the finest fly fishing in the country. Lodging at conference rates is available from August 1 through 10; discounts for airfare and auto rental are also available to conference participants.
Conference registration is $500. For full details, contact APPE, 410 N. Park Ave., Bloomington, IN 47405; 812/855-6450; FAX 812/855-3315; appe@indiana.edu; http://ezinfo.ucs.indiana.edu/~appe/home.html.
Roger B. Dworkin, Limits: The Role of the Law in Bioethical Decision Making (Bloomington: Indiana University Press, 1996). Dworkin points out that we often have recourse to the law in our attempts to resolve the ethical and policy dilemmas brought to us by the ever-advancing progress of biology and medicine. He considers a range of vexing contemporary issues (abortion, sterilization, alternative reproductive techniques, "the new genetics," death and dying and the use of human subjects in research), and he argues that the law is ill-equipped for this role.
He examines the common law, legislation, constitutional adjudication and administrative law and outlines his suggestions for a more limited role for the law in these troubling areas.
Judith A. Granbois and David H. Smith, "The Anglican Communion and Bioethics" in B. Andrew Lustig, ed., Theological Developments in Bioethics: 1992-1994 (Dordrecht: Kluwer Academic Publishers, 1997).Granbois and Smith's chapter is one of twelve reports on various faith traditions. It appears in Volume 5 in a series of Bioethics Yearbooks sponsored by the Center for Medical Ethics and Health Policy at Baylor University.
They begin with a discussion of Anglican understandings of health and healing and go on to consider a variety of topics in that context, including issues raised by new reproductive techniques (status of the embryo, donated ovarian tissue, assisted reproduction and sex selection), abortion, euthanasia, HIV/AIDS and genetics. The chapter reports on documents produced and actions taken by the various judicatories that are members of the worldwide Anglican Communion.
David H. Smith, Kimberly A. Quaid, Roger B. Dworkin, Gregory P. Gramelspacher, Judith A. Granbois and Gail H. Vance, Early Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetic Diseases (Bloomington: Indiana University Press, forthcoming). Funded by our grant from the National Center for Human Genome Research at NIH, this book is the culmination of our three-year project on presymptomatic genetic testing for late onset genetic diseases. The core of the book is 29 case studies, accompanied by analysis and commentary; it also offers guidelines extrapolated from the cases, designed to provide practical guidance for real dilemmas confronted in genetic counseling.
The cases explore a range of difficult issues. Suppose an individual who is at risk for a genetic disorder seeks knowledge about his own genetic status. If that information will reveal the genetic status of a relative who does not want to know, whose interests should prevail? If one family member needs a kidney transplant, must other family members reveal the results of genetic testing that might determine their suitability as donors?
In what circumstances, if any, may a genetic counselor break confidentiality? Suppose a father is unwilling to disclose the results of his genetic test to his adult children, who are at risk for a serious but treatable disorder. Or suppose that an airline pilot refuses to inform his employer that he has tested positive for the mutation that causes Huntington disease.
What is the appropriate role for a genetic counselor's professional judgment? Should a counselor ever state his or her opinion of a consultand's proposed course of action? Or should patient autonomy rule in all situations?
How is informed consent defined in the context of genetic counseling? Is it ever appropriate to postpone or deny testing? What considerations should govern the testing of children for late onset diseases, particularly disorders that cannot be prevented or treated?
In addition, we sponsored two public lectures during the spring semester. On February 11, Laurence Thomas, Philosophy, Syracuse University, spoke on "Equality and Fragility: Recognizing Myself and My Neighbor"; his talk will be published in the Poynter Center's monograph series. Elizabeth Anderson, Philosophy, University of Michigan, presented a lecture entitled "What Is Liberal Community?" on February 27.
Wednesday seminar presenters from Indiana University and their topics were: Richard Burke, Telecommunications, " Stimulating the Moral Imagination with Henrik Ibsen's Enemy of the People"; Paul Voakes, Journalism, "What Were You Thinking? A Study of Journalists Who Were Sued for Invasion of Privacy"; David Williams, Law, "The Militia Movement and the Second Amendment Revolution" ; Brian Schrag, Poynter Center and the Association for Practical and Professional Ethics, "With Bones of Contention "; Milton Fisk, Philosophy, "Compassion as Vital for Reforming Health Care"; Judith L. Failer, Political Science, "The Politics of Civil Rights"; Peter Finn and Amy Holtzworth-Munroe, Clinical Science, Psychology, "Ethical Questions and Considerations in Psychological Research with At-Risk Populations"; and John L. Lucaites, Speech Communication, "Ben Franklin and The Bell Curve."
In addition, Kathryn Abrams, Law, Northwestern University, led a seminar on "Women and Agency in Feminist Legal Theory."
Here's the list:
Last updated: 23 May 1997
URL: http://www.indiana.edu/~poynter/nl1996-2.html
Comments: pimple@indiana.edu
Copyright 1997, The Trustees of Indiana University