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The National Institutes of Health has awarded the Poynter Center a three-year grant to fund an innovative ethics course entitled "Scientists and Subjects: A Web-based Seminar on the Ethics of Research with Human Subjects."
The seminar will be offered once in the first year of funding, twice in the second year, and three times in the third year. Each time it is offered, the seminar will begin with a two-day retreat in Bloomington, followed by several months of training via the World Wide Web. The first retreat is tentatively scheduled for April 27-29, 2000.
To maximize interaction and attention to participants' concerns, each cohort will be limited to 15 participants. Participation will be limited to researchers and faculty members from two distinct groups of institutions -- the Committee on Institutional Cooperation (CIC) and the MEDIC-B Partnership Program Institutions.
The CIC comprises the Big Ten schools plus the University of Chicago. The MEDIC-B Partnership Program, funded by the National Institute of General Medical Science of NIH, is intended to establish and strengthen academic and collegial bridges between Indiana University and seven Minority-Serving Institutions (MSIs) and to enhance undergraduate science education at all participating institutions.
The seven MSIs are Alcorn State University, Clark Atlanta University, Morehouse College, New Mexico State University, Spelman College, the University of North Carolina- Pembroke, and Xavier University of Louisiana. (More information on MEDIC-B can be found on the World Wide Web at http://www.indiana.edu/~grdhouse/mdpartn.html.)
Administrators from the CIC and MEDIC-B schools will identify one or two candidates for the seminar each year. Project directors Kenneth D. Pimple and Julia Pedroni will select fifteen participants from this pool of candidates.
The projects primary goal is to provide researchers with high-quality, customized training in the ethical, legal and social issues involved in research with human subjects. The training will be customized to suit the needs and interests of each cohort of participants.
Before attending the course, each participant will write a brief statement outlining his or her concerns about and interests in research with human subjects; these statements will then be distributed to all participants.
Participants will assemble on the campus of Indiana University-Bloomington for an intensive, 48-hour face-to-face retreat in which they will meet the course coordinators and receive their initial training.
Following the retreat, additional training will be delivered over a three-month period via interactive but asynchronous communication using the World Wide Web. Use of the Web will (contnued from page 1) provide flexibility that will enable busy researchers to fit the extended course into their schedules.
Researchers who complete the course will acquire important knowledge and skills:
The seminar promises to contribute significantly to the improvement of the moral standard for research with human subjects in the United States.
More information about the seminar is available from Kenneth D. Pimple, Research Associate, Poynter Center for the Study of Ethics and American Institutions, Indiana University, 618 East Third St., Bloomington, IN 47405; 812/855-0261; FAX 855-3315; pimple@indiana.edu.
Or, appropriately for a web-based course, you can check out the
project's Web site at
http://www.indiana.edu/~poynter/sas/index.html.
The National Science Foundation has awarded a grant to the Association for Practical and Professional Ethics (APPE) to extend and expand "Graduate Research Ethics Education." The project, now in its fourth year, provides instruction in the ethical issues surrounding scientific research, training in teaching research ethics, and an opportunity for research collaboration for graduate students and post-doctoral fellows in science and engineering. Project director is Brian Schrag, APPE Executive Secretary.
The project's primary objective is to nurture a community of promising young researchers, providing them with skills in ethical thinking, understanding of the historical context of scientific misconduct and awareness of the interdisciplinary nature of ethical issues in science and engineering.
Capitalizing on the experience of prior participants, the project also will 1) develop a set of teaching materials and techniques for instruction in research ethics, emphasizing best practices; 2) develop materials that capture the ethical environment and ethical problems of graduate students and post-docs from their perspectives and a set of recommendations for improving graduate research ethics education; and 3) produce scholarly papers on issues in research ethics, especially those encountered in graduate education.
Each summer, the Association convenes an intensive one-week workshop for 15 students, which focuses on readings and discussion. Workshop faculty are Schrag, Deborah Johnson, Public Policy, Georgia Institute of Technology; Karen Muskavitch, Biology, Indiana University; Michael Pritchard, Philosophy and Director, Center for the Study of Ethics in Society, Western Michigan University; Aarne Vesilind, Engineering, Duke University; and Vivian Weil, Ethics and Director, Center for the Study of Ethics in the Professions, Illinois Institute of Technology. Guest lecturers for this year's workshop were Stephanie Bird, Massachusetts Institute of Technology, and Taft Broome, Howard University.
In September, the first of a series of collaborative conferences brought together project alumni for a two-day conference in Bloomington. They will collaborate on several projects, including a handbook on research ethics for graduate students, materials for teaching research ethics, and articles on research ethics for scholarly publications.
Subsequently, the new NSF grant will fund an additional 1.5 day seminar on teaching research ethics for current year participants and an annual collaborative conference for participants from previous years. Both events will convene in conjunction with APPE's Annual Meetings, held in February each year.
Over the life of the project, 66 students have participated, representing more than 30 major institutions. Each participant must be nominated by a faculty member. As part of the project, each student writes a case study and commentary; workshop faculty also write commentaries on the cases, which are collected and published by the Association. Topics covered to date include student-mentor relations, intellectual property, whistle blowing, research management, research applications, constraints on use of ancient human remains, and human and animal subjects.
Volumes 1-3, containing 50 cases, are available for $39 plus $10
shipping and handling or $15 each. To order: Association for Practical
and Professional Ethics, Indiana University, 618 E. Third St.,
Bloomington, IN 47405; 812/855-6450; FAX 812/855-3315; appe@indiana.edu.
With funding through a three-year grant from the National Center for Human Genome Research at NIH, six IU collaborators wrote a book that analyzes some of the ethical issues raised by presymptomatic genetic testing. The book is Early Warning (IU Press, 1998); authors are David H. Smith, Kimberly A. Quaid, Roger B. Dworkin, Gregory P. Gramel-spacher, Judith A. Granbois and Gail H. Vance.
We are continuing our exploration of the ethical issues that are raised by genetic and genomic research. Throughout the spring and early summer, the Poynter Center was host to a series of three seminars given by nationally recognized experts in the field, organized by Center Research Associate Julia Pedroni.
Starting off the series was Robert F. Weir, Director of the Program in Biomedical Ethics and Medical Humanities at the University of Iowa. In his seminar, entitled "The Tissue Issue: What's the Big Deal about Research on Stored Tissues?," Weir identified significant but often unrecognized moral problems that suround genetic research using stored tissue samples. He described concerns about the adequacy of informed consent to the use of tissue samples and privacy protections for tissue sample donors.
The importance of these concerns is clear when one considers that conservative estimates put the number of tissue samples stored in the United States in the hundreds of millions. It is troubling that much of the genetic research using these samples is, in Weir's words, "below the radar screen" of IRBs and research ethics committees. He suggested possible policy responses, which he discusses in detail in his forthcoming book, Stored Tissue Samples: Ethical, Legal, and Public Policy Implications.
Glenn McGee of the University of Pennsylvanias Center for Biomedical Ethics and the Federal Advisory Board on Clinical and Molecular Genetics gave the second talk of the series. McGees subject was the ethics of human cloning.
In a very provocative seminar, he outlined a number of conceptual adjustments that are needed for understanding and answering the moral questions raised by the possibility of human cloning.
First, the concept of the family needs to be updated in order to reflect the diversity of relationships that characterize the modern family as a result of techniques of assisted reproduction. Second, the conceptual focus has shifted from having babies to making babies, and this shift may have implications for the responsibilities of prospective parents. Finally, the notion of what it is to be fertile/infertile needs to be revisited in light of current technology. (E.g., is human cloning a potential cure for infertility?).
McGee argued that adopting a child and creating a human clone (if that becomes possible) are closely related. He said that current regulations and limitations regarding adoption can serve as a useful model for regulating access to human cloning technology.
The series closed with a seminar by Eric Juengst, who served as the first Chief of the Ethical, Legal, and Social Implications Branch of the National Center for Human Genome Research at NIH before taking his current post at Case Western Reserve's Center for Biomedical Ethics.
In his talk, "Anticipating Enhancement: Conceptual and Ethical Issues on the Frontiers of Gene Therapy," Juengst argued that it is difficult if not impossible to draw a clear line distinguishing enhancement from therapy in genetic medicine. Moreover, he suggested, since current public policy regarding research into human gene transfer procedures rests on this flawed distinction -- permitting only human gene transfer research aimed at therapy and prohibiting enhancement protocols -- current policies will fail to prevent some morally troublesome applications of genetic medicine.
Instead, Juengst argued, policy makers should focus on identifying what
it is we are really worried about when we express concern about genetic
"enhancement," such as social injustice, and craft public policy to
address those concerns.
With the beginning of the fall semester, we are resuming the Poynter Center's long-running schedule of interdisciplinary faculty seminars.
The opening session for Fall 1999 featured Richard B. Miller, Professor of Religious Studies at IU, who discussed "Pediatric Paternalism." Presenting on September 8, Miller drew on his experiences as an observer in pediatric intensive care units (PICUs) in Indiana and, during his year as a Fellow at Harvard University, in Massachusetts.
His paper outlined pediatric care providers' responsibilities when there might be an occasion to act paternalistically. In adult medicine, a paternalistic act ignores or overrules a competent patients wishes or decisions in order to prevent a harm or produce a good for that patient, involving a worrisome compromise of patient autonomy. Miller argues that paternalism in pediatrics is complicated by factors that are not applicable in the case of adults, especially developmental and social factors. This difference requires a different kind of analysis.
Pediatric treatment decisions must be age-appropriate, and care givers must be alert to the fact that some children can demonstrate decision-making competence before the traditional age of majority. Miller argued that professional care givers might act paternalistically in morally unacceptable ways by presuming incompetence when treating older adolescents or by infantilizing precompetent children.
Social factors are relevant insofar as children are normally part of a family, and parents are typically assigned primary authority to make decisions for their children. Focusing on acts that resemble paternalism, Miller argued that it is sometimes permissible for professionals to override parental authority in medical decision making. His arguments deployed the norm of mediated beneficence and the distinction between first party and second party paternalism, one of ten distinctions in types of paternalism that he described.
On September 17, Mary Terrell White, Community Health, Wright State University School of Medicine, discussed "Genetic Research in the Workplace: The Dilemma of Interim Findings."
Her talk examined research on genes that confer susceptibility to occupational diseases such as berylliosis. She is interested in whether interim results of genetic analysis should be disclosed to research subjects, given that their significance may not be fully known or understood.
Following Phillip Reilly's criteria, formulated in 1980, she expands on his work. White argues that subjects' perceptions of risk should be factored into the decision-making process around informing subjects. She argued that because employee-subjects can lower their health risks by changing jobs, and because their perceptions of risk may be one of the factors that drives such a change, employee/subjects need to have the option of receiving information about their genetic status that is as complete as possible, even if the meaning of the information is uncertain.
Scheduled for November 3 is a presentation by Holly Stocking, Journalism, Indiana University. Stocking's topic is "Hunting for Hope in the Academy."
Can academic scholarship harbor hope for humanity? Or is it destined to become just another of many contributors to the demise of our species?
Prodded by the unflinching observations of an eminent colleague, a journalist-turned-academic goes hunting for hope in the scholarship of her own field of mass media studies. Her search raises uncomfortable questions not only for herself, but for other academics who share her emotional concerns.
This semester's seminar series is being organized by Poynter
Center Research Associates Kenneth D. Pimple and Julia Pedroni.
The Poynter Center's Teaching Research Ethics (TRE) workshop is entering its seventh year. The workshop, directed by Research Associate Kenneth D. Pimple, is designed to enable faculty members to incorporate research ethics into their graduate courses. TRE has gained an international reputation for excellence, attracting more than 210 participants from 60 universities and research institutions in 28 states, Brazil, Canada, Germany, Israel, Kuwait, Mexico, Norway and the United Kingdom. TRE began in 1994 with three years of funding from the U.S. Department of Education's Fund for the Improvement of Post-secondary Education (FIPSE). For the duration of the FIPSE funding, participation in the workshop was limited to 30 faculty members per year, and the pool of eligible universities was restricted to the members of the Committee on Institutional Cooperation -- the Big Ten universities plus the University of Chicago. When funding from FIPSE ended, the workshop was opened to everyone who was interested in attending, enrollment was increased to 45, and a fee was initiated to cover expenses.
Here are some comments from participants in the 1999 workshop:
The 1999 workshop was sponsored by nine of the largest research universities in the United States Indiana University, Michigan State University, the Ohio State University, Texas A&M University, and the Universities of Illinois-Urbana/Champaign, Iowa, Michigan, Minnesota and Wisconsin-Madison.
Evaluations and comments from workshop participants have always been positive. When the fifth anniversary of the first workshop loomed, we thought it would be a good opportunity to try to gauge the workshop's long-term impact a little more formally.
We surveyed the twenty-six people who attended the first workshop in May 1994. Sixteen (62%) responded to the survey, which was distributed by mail in April and May. Respondents ranked the nine survey questions from 0 to 5, with 0 = don't know/no opinion, 1 a low ranking and 5 a high ranking.
The following questions were ranked 4 or 5 by at least 40% of respondents (the scale for these three questions: 1 = no impact . . . 5 = significant impact):
1. How much impact has the workshop had on your teaching in general? (44%)
2. How much impact has the workshop had on your teaching of science? (56%)
3. How much impact has the workshop had on your teaching of research ethics? (88%)
Furthermore, 50% of respondents reported that many or most of the students and faculty members in their departments/units and universities have been positively affected by their participation in the workshop (questions 4 and 5). In addition, 69% of respondents ranked question 6 at 4 or 5 ("I talk with colleagues and students about the responsible conduct of research more than I did before I participated in the workshop," with 1 = strongly disagree . . . 5 = strongly agree).
Finally, it is interesting to note that every respondent save one marked several questions 3, 4, or 5. The exception -- apparently dissatisfied with the workshop experience or frustrated by the survey itself -- marked all questions 1.
The seventh annual Teaching Research Ethics Workshop will meet in
Bloomington May 17-20, 2000. The workshop fee is $450. For more
information: http://www.indiana.edu/~poynter/tre.html.
In addition to convening a bioethics discussion group that meets approximately monthly, Julie Pedroni is continuing her work as an impresario for the Poynter Center. Julie has recruited two lecturers who will give presentations in December and January.
Martin Wilkinson will join us on Wednesday, December 2, when he will offer a seminar entitled "Research, Informed Consent, and the Limits of Disclosure." Wilkinson will be visiting the Poynter Center during a trip to the United States. At home in New Zealand, he is a faculty member in the Department of Political Studies at the University of Auckland.
Before accepting his appointment on the Auckland faculty, he studied at Harvard and completed his doctorate at Oxford University.
Wilkinson has written and published on a wide variety of topics, including paternalism and well-being, age discrimination, the use of inducements in human subjects research, and rationality in economics.
Most recently, his interest in the ethics of research involving human subjects has led him to service on the working group charged with revising Aucklands National Standards for Ethics Committees.
Want to know "What Feminism Can Do for Bioethics?" Noted bioethicist and feminist philosopher Laura Purdy will address that question in her seminar of the same title, slated for Friday, January 21, 2000. (Stay tuned for specifics about the time of this talk.) In addition to her many scholarly articles, Professor Purdy's recent monographs and edited collections include such titles as "In Their Best Interest: The Case Against Equal Rights for Children;" "Reproducing Persons: Issues in Feminist Bioethics;" "Feminist Perspectives in Bioethics;" "Violence Against Women: Philosophical Perspectives;" and "Embodying Bioethics: Recent Feminist Advances."
Professor Purdy currently holds positions as Bioethicist at the University Health Network and the University of Toronto Joint Centre for Bioethics, as well as Professor of Philosophy at the University of Toronto.
Please check the Poynter Center's Web site for details about these
and other forthcoming lectures, seminars and presentations http://www.indiana.edu/~poynter/public.html.
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