Bioethics examiner

A Quarterly Publication from the Center for Bioethics

Bioethics examiner

Spring 2000 Volume 4 Issue 1

UNIVERSITY OF MINNESOTA

Deprivation, Disease, and the Ethics of International Research By Alex London, PhD My Gender Made Me Do It:

Recent controversies over the conduct of international

Within the US, the scandals at Willowbrook and

Gender Identities and the

medical research have generated intense and at times

Tuskegee stand as powerful reminders of the ways in

Genetics of Alcoholism —

acrimonious disagreements about the ethics of human

which convenient and vulnerable populations can be

Carolyn McLeod

subjects research. The fact that the profound social

exploited in medical research. One common objection

Page 2

deprivations of developing countries cannot be wholly

to both of these cases is that although the ostensible

separated from the incidence of disease and disease

target of the research focused on the specific diseases

Profiles —

transmission that prevail in their populations poses a

of hepatitis and syphilis respectively, the research itself

Carolyn McLeod

unique challenge to the tradition of research ethics that

relied on the maintenance of ongoing social deprivations

Page 3

developed in response to a series of prominent scandals

that set the background conditions for the prevalence of

in the US and other developed nations. In order to

those diseases in the first place. Rather than attempting

Alex London

respond to the needs of developing world populations

to relieve some of the fundamental burdens posed by

Page 5

while avoiding exploitation, it will be necessary to evaluate

those social deprivations, the researchers in these cases

international clinical trials from a perspective that reaches

chose to exploit those social conditions for the sake of

beyond the narrow question of research design.

possible advances in medical knowledge. As a result, the

Midwest Intensive Bioethics Course 2000

Continued on Page 4

Page 7

Center News Page 9

Bioethics Courses Page 9

From the Director...

Gene Therapy on Trial By Jeffrey Kahn, PhD, MPH The recent death of Jesse Gelsinger has served as a wake-

Gene therapy and other kinds of cutting

up call for researchers, research institutions, government

edge research are attempting to cure

Calendar of Events

regulators, and the public about how research is carried

disease in a new way. They attempt to

Page 10

out in the United States. Mr. Gelsinger was an 18 year-old

create true and permanent cures for

man from Arizona, with a genetic disorder that prevented

illness and disease by focusing on the root

Recent Faculty

his body from properly metabolizing ammonia.

of the problem–by making repairs at the

Publications

He enrolled in a clinical trial at the University of

genetic level. This has allowed treatment for

Page 11

Pennsylvania that was attempting to use gene therapy

diseases whose symptoms may only turn up in the

Jeffrey Kahn

to correct the disorder. But rather than curing him, the

future, or may create chronic problems but not

Center Publications

technique apparently caused his death. The chain of

necessarily cause death–such as some forms of arthritis.

Page 11

events that has followed–including the shutdown of all

But these repairs are not risk-free, as the death of Jesse

research at Penn’s Institute for Human Gene

Gelsinger reminds us. And so we need to ask what levels

Therapy–call into question not only the safety of the

of risky research are acceptable for the gains of potential

techniques of gene therapy, but the conditions and

cures for maladies that may not harm us anytime soon.

protections under which all clinical research is carried out in this country.

Continued on Page 6

My Gender Made Me Do It: Gender Identities and the Genetics of Alcoholism1 By Carolyn McLeod, PhD An important ethical concern about genetics research

One implication of this research is that genetics plays

is how it will change the way that we think about

a lesser role in female alcoholism than in male alcoholism.

ourselves and how others think of us, and whether the

Some researchers have challenged that finding and

changes will make us better off or worse off. For instance,

argued for a new type of alcoholism in women: an early

think of the discovery of a genetic basis for alcoholism:

onset type that has a strong genetic component (see Hill

The disease model

how would it make me feel if I’m dependent on alcohol,

1995). Although similar in some ways to Type II

of alcoholism . . .

knowing then that my behavior might be partly genetic?

alcoholism in men, it does not mimic it entirely. The claim

seems to create more

How would it change the way that others perceive me,

is not that women who have the new type of alcoholism

stigma than it

knowing that I might be genetically predisposed to drink

have the personality traits associated with Type II.

removes.

heavily? Research into the genetic origins of alcoholism confronts us with those questions, as many alcoholics are all too aware. Surprisingly, it also raises issues about the identities of alcoholics that concern their gender. According to recent studies, people dependent on alcohol tend to display the extremes of traditional gender characteristics: aggressiveness and impulsiveness for men, emotionality and neuroticism for women. The research implies that they are identifiable not only in terms of excessive alcohol consumption but also in terms of harmful gender traits. Ultimately, then, the ethical issue of how that research will impact on people’s identities is partly feminist. Findings about gender differences in the personality traits of alcoholics are mostly found in genetic studies that posit two different types of alcoholism (see, eg, Cloninger et al 1981; for a review of the relevant studies, see Cloninger et al 1996). Type I-described by some researchers as “female-like” (Gilligan, 1987)–is characterized by high levels of anxiety, attentiveness to detail, emotional dependence, an eagerness to help others, rigidity, and sentimentalism (Cloninger et al

It is important to realize, moreover, that researchers deem the links between gender traits and alcoholism to be genetic. It is not that a socially determined quality of “emotionality” or low self-esteem is tied to alcoholism, especially in women. The claim is that the personality type and the alcoholism type are both genetic, and might even have similar genetic origins (see Heath et al 1997, 139, 140). If the personality traits were mediated by social factors only, one might be less inclined to believe that the different types of alcoholism are genetic. One might question, for example, whether social influences that make many men emotionally detached also make them prone to alcoholism. However, by claiming that the gender traits are genetic, the researchers subject themselves to serious suspicion from people with feminist concerns. From a feminist perspective, there is good reason to question that genetically speaking, women who are alcoholics are more likely than their male counterparts to be neurotic and emotional, whereas male alcoholics are more likely to be aggressive and promiscuous.

1996, 20, 21). It is genetically mediated, though not to

One worry from a feminist ethical perspective is that

the same degree as Type II alcoholism, which is “only

the new research will multiply the stigmas of being an

weakly [influenced] by environmental factors” (ibid, 18).

alcoholic to include traditional gender stigmas, such as

The latter is an earlier onset form of alcoholism and

the “neurotic female” or the “overly aggressive male.”

is correlated with such personality traits as emotional

The disease model of alcoholism–now a genetic

detachment, tough mindedness, impulsiveness, lack

model–was meant to reduce the social stigma of being

of inhibition, and aggressiveness (ibid, 20, 21). The

an alcoholic. Some people assume (wrongly) that it

“phenotype” of Type II alcoholism is common only in

allows the alcoholic to say, “My genes made me do it.”

males, whereas both males and females exhibit Type I

But that model seems to create more stigma than it

alcoholism. Another behavioral trait that has been linked

removes. For female alcoholics, potentially, it creates an

only with Type II is sexual promiscuity (Mahowald 2000,

association in people’s minds between neuroticism and

250). Thus, the studies help to dispel at least one gender

alcoholism. We might find out a woman is an alcoholic

myth: that women who drink a lot are loose women.

and immediately assume that she’s neurotic as well. Continued on Page 8



Profile Carolyn McLeod, PhD Carolyn McLeod, PhD currently has postdoctoral

Dr. McLeod also has research interests in the ethics

research fellowships with the Center for Bioethics and

of addiction treatment and research, and ethical

with the Social Sciences and Humanities Research

issues in international treatment and research.

Council of Canada. Last August, she defended her PhD

Her postdoctoral work is on addictions, the ethics

in philosophy from Dalhousie University in Halifax,

of genetic research into their origins, and our moral

Nova Scotia. She received both her MA (‘95) in

attitudes toward people with addictions. Her recent

philosophy and her BAH (‘92) from Queen’s University

work in this area is “The Integrity of People with

in Kingston, Ontario.

Addictions: A Feminist Relational Perspective”

Dr. McLeod’s research interests have focused largely on the intersection of feminist ethics and reproductive health care. A manuscript she has been working on, “Self-Trust and Reproductive Autonomy,” combines those interests. In it, she argues that patient self-trust is an important condition for autonomous decision-making,

(under review). Concerning the ethical debates on global issues in research and treatment, she is interested in how theories of social justice should

Carolyn McLeod

inform them, and has been invited to speak on that topic at the International Congress of the World Federation of Hemophilia this summer in Montreal.

Carolyn McLeod, PhD is a 1999-2000

yet it is often undermined by forces relating to women’s

Dr. McLeod has had extensive teaching experience in

Postdoctoral Fellow

oppression in reproductive medical contexts. Narratives

both bioethics and environmental ethics, and has been

at the Center for

of women’s experiences in those contexts ground her

active in a number of professional organizations. She is

Bioethics.

theoretical claims, and some of the narratives are based on

currently the newsletter editor for the Canadian Society

the experiences of patients she met while doing a clinical

for Women in Philosophy and a member of the equity

practicum in obstetrics during her doctoral studies.

committee for the Canadian Philosophical Association.

Selected Publications Selected Articles McLeod C. Our Attitude Toward the Motivation of

McLeod C, Sherwin S. Relational Autonomy, Self-trust,

Trusted Others. The Southern Journal of Philosophy,

and Health Care for Patients Who are Oppressed. In

forthcoming. McLeod C. Diagnosis Difference: The Moral Authority of Medicine (review). Ethics, forthcoming. McLeod C. Genes, Women, and Equality (review). Feminist Approaches to Bioethics Newsletter, forthcoming.

MacKenzie C, Stoljar N (eds.) Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self. New York: Oxford University Press, 1999. McLeod C. Women’s Autonomy and the “G” Case. Canadian Bioethics Society Newsletter 3(2), May 1998: 6.

McLeod C. Love’s Labour (review). Hastings Center Report, forthcoming.



Continued from Page 1

historian David Rothman has urged that “the Tuskegee

for developing nations with high rates of HIV infection,

and the Willowbrook experiments offer both practical

the burden of fighting this disease and its devastating

and principled support for maintaining as rigid a

effects on public health are themselves serious roadblocks

distinction between social deprivation and biological

to achieving much needed social and economic

conditions as possible” (Rothman D, 1982). In essence,

development (Bloom D, Canning D, 2000).

Rothman’s point is that medical research should target biological conditions but not do so in a way that is predicated on the exploitation of social deprivations. Clinical research that targets the specific needs of developing world populations in an achievable, real world clinical context can itself be an important tool for fostering social and economic progress.

world clinical context can itself be an important tool

Assuming that Rothman’s distinction makes sense, what

for fostering social and economic progress. At the same

are its ramifications for the conduct of international

time, however, we must recognize the very real risks of

research? Within the United States, for instance, the rate

exploitation and implement safeguards that will prevent

of vertical HIV transmission– transmission of the disease

conditions of poverty and deprivation from being treated,

from pregnant women to their newborn children–has

whether by design or merely in effect, as a laboratory for

been dramatically reduced by the implementation of a

the conduct of research that will ultimately only benefit

regimen of AZT (zidovudine) known as the 076 protocol.

populations of the developed world. To this end, research

But at $800 per mother and child this intervention far

conducted in the developing world should be targeted as

outstrips the average per capita healthcare budget of

specifically as possible at the needs of research subjects

nations in the developing world that frequently bear the

themselves. This would include trials that are designed

heaviest burdens of HIV infection. As a result, in 1998

to answer questions that are specific to the clinical

alone nearly 590,000 new pediatric HIV infections

context of that population. Perhaps most importantly,

occurred, 90% of which were in Africa (De Cock K et al,

though, it must be recognized that clinical research is

2000. Hard won gains in infant survival rates of the last

the intervention of second choice. This means that where

20 years are being eroded on that continent and vertical

significant improvements in public and individual health

HIV transmission remains a significant source of new

can be made by addressing social deprivations directly,

HIV infections in the developing world.

this is to be preferred. It also means that before clinical

The significant difference in the rate of vertical HIV transmission in developing nations of east and southern Africa in comparison with industrialized countries such as the United States is less a feature of some mysterious difference in the disease process than a factor of the vast social and economic disparities that separate these populations. If the only ethically permissible means of addressing the plight of developing world populations is by working to eliminate the baseline social and

research is conducted in the developing world we need to ensure that the research in question represents an effective means of addressing substantive health care needs of the population in question. It is not enough to design trials to answer questions that are relevant to the host community. It must also be the case that answering these questions is itself a part of a coordinated effort to address meaningful health care priorities of that population.

economic disparities that are partly responsible for their

References

increased rate of disease susceptibility then the welfare

Rothman D. Were Tuskegee and Willowbrook ‘Studies

of thousands of individuals would be jeopardized by the

in Nature’? The Hastings Center Report 1982:6.

slow pace of social reform and compensatory justice. It would also be ironic if the existence of complicated and expensive interventions within wealthy, technologically developed nations with well established health care

De Cock K, et al. Prevention of Mother-to-Child HIV Transmission in Resource-Poor Counties. JAMA 2000;283(9):1175-1182.

infrastructures should be taken as sufficient reason to

Bloom D, Canning D. The Health and Wealth of Nations.

prohibit the development of effective, inexpensive, and

Science 2000 287(5456):1207-1209.

portable interventions that can be disseminated and implemented in impoverished communities. After all,



Clinical research that targets the specific needs of developing world populations in an achievable, real-

Profile Alex London, PhD Alex London, PhD is a 1999-2000 postdoctoral fellow

He is also working on a book manuscript, tentatively

at the Center. In July he will join the Philosophy

titled Aristotelian Practical Ethics. Here important aspects

Department at Carnegie Mellon University as an

of Aristotle’s ethics are explored for their implications in

Assistant Professor where he will continue to pursue his

various areas of applied ethics. For instance, the book

interests in ancient and contemporary ethics.

will explore Aristotle’s conception of the emotions, their

Dr. London came to the Center from the University of Virginia where he received his PhD in Philosophy in 1999. There he studied ancient philosophy, ethical theory, and bioethics, and began to focus his research on the way that ancient approaches to ethics and moral psychology can illuminate contemporary problems in applied ethics. Since 1997 he has been an officer for the Society for Bioethics and Classical Philosophy. He received his BA in Philosophy and Literature from Bard College in 1994. The immediate focus of Dr. London’s current research deals with the relationship between theoretical and practical ethics and various ethical issues in crosscultural medical research. With respect to this first area, he is editing a special issue of the Theoretical Medicine and Bioethics, tentatively titled “The Place of Theory in Practical Ethics.” In the area of cross-cultural medical research, Dr. London is currently working on a paper that takes a closer look at the role of equipoise in the

relationship to reason, and the implications of this relationship for theoretical and practical approaches to applied ethics. Additionally, Aristotle’s conception of the role of physiology in the realization of emotional states is used to shed light on the ethics of using psychopharmacology to enhance human affective traits and to enliven our evaluation of the effects of depression on end-of-life decision making. Additional topics include ethical issues in managed care and the place of applied ethics in liberal democracy. While at the Center, Dr. London was an instructor in the ethics portion of Clinical Medicine I for firstyear medical students and he is currently teaching a graduate seminar on the ethics of research on human subjects in the Department of Philosophy and the School of Public Health. He has also been

Alex London

an active participant in the Center’s outreach activities. He and Tracy Ellinwood will be married in June.

Alex London, PhD is a 1999-2000

evaluation of international human subjects research.

Postdoctoral Fellow at the Center for

Selected Publications:

Bioethics.

Book Chapters London A, Moreno J. Consensus, Ethics and Politics in

London A. Bone Marrow Transplants for Advanced

Embryo Research. In Lauritzen P (ed.) Cloning and the

Breast Cancer: the Story of Christine deMeurers.

Future of Human Embryo Research. New York: Oxford

In Arras J, Steinbock B (eds.) Ethical Issues in Modern

University Press, forthcoming.

Medicine Fifth Edition. Mountain View, CA: Mayfield

London A, Moreno J, Zuckerman C. Ethical Considerations

Publishing Company, 1998.

in the Care of Patients With Neurosurgical Disease. In

Articles

Cottrell J, Smith D (eds.) Anesthesia and Neurosurgery,

London A. Moral Knowledge and the Acquisition of

Fourth Edition, St. Louis, MO: Mosby, forthcoming.

Virtue in Aristotle’s Nicomachean and Eudemian Ethics.

London A. Thrasymachus and Managed Care: How

The Review of Metaphysics, forthcoming.

Not to Think About the Craft of Medicine. In Polansky

London A. An Aristotelian Conception of Practical

R, Kuczewski M (eds.) Bioethics: Ancient Themes in

Ethics. Kennedy Institute of Ethics Journal, forthcoming.

Contemporary Issues. Cambridge, MA: MIT Press, forthcoming.

London A. The Ambiguity and the Exigency: Clarifying ‘Standard of Care’ Arguments in International Research. Journal of Medicine and Philosophy, forthcoming. London A. Virtue and Consequences: Hobbes on the Value of the Moral Virtues. Social Theory and Practice Spring 1998;24(1):1-23.




As in all clinical research, informed decision making

Never before have issues of protecting research subjects

by potential subjects is a critical but elusive goal. The

been so carefully scrutinized or taken so seriously, and

investigation following Jesse Gelsinger’s death

the ongoing gene therapy case at the University of

purportedly uncovered evidence of incomplete and

Pennsylvania has created a drama whose cast includes

inaccurate disclosure of the risks of that form of gene

medical researchers, the US Congress, disease group

therapy. Even when information is adequate, studies

advocates, and federal bureaucrats. Each has a somewhat

show that subjects tend to over estimate the potential

different stake in the outcome of all the attention being

benefits of research while at the same time

paid to the medical research process, but whatever the

. . . studies show that

underestimating its risks. This is a dangerous

outcome, all must keep their eyes on the ultimate

subjects tend to over

combination when we are asking patients to put

goal–high quality, careful research conducted in ways

estimate the potential

themselves in harm’s way primarily for the good of

that respects the rights and interests of subjects.

benefits of research

patients who will come after them, with only a limited

Otherwise we face the prospect of a research enterprise

while at the same time

chance that they will receive benefit themselves.

that subjects us to science rather than carrying out

underestimating its risks.

A growing complication in these types of high tech clinical research is the blurring of lines between

A version of this article appeared in an “Ethics Matters”

researchers and the pharmaceutical or biotechnology

column on CNN Interactive (www.cnn.com/health).

companies who fund their research projects. There are increasing numbers of outright conflicts of interest when researchers have a financial stake in biotechnology startups that are created to develop and market their discoveries, creating incentives for recruitment of patients as much in the interest of researchers’ financial gain as for the interests of particular subjects. A key concern of regulators is what looks like a widespread and alarming failure to report harmful side effects to subjects in gene therapy trials at Penn and elsewhere. While such reporting is a required part of federal oversight of research, there are grumblings from inside the beltway that current policies may not be enough. The question then is whether we need greater adherence to existing rules, additional new tighter regulation and oversight, or both. Following existing rules would certainly be a good start.



science in service to us.

Midwest Intensive Bioethics Course (MIBC) 2000 July 20-22, Minneapolis, MN Ethics of Sexuality and Reproduction in Health Care MIBC 2000 is taking a new direction. Participants and

Tuition for the course is $700. Two student scholarships

bioethics faculty will interact with experts who bring new

for people pursuing careers in bioethics will be made

and diverse perspectives to the course. This two-and-a-

available by a grant from the Medtronic Foundation.

half-day course will focus on ethical issues that arise at

To apply, letters regarding interest and career goals

the intersection of health care and human sexuality and

should be submitted to:

reproduction. It will examine the ways in which these issues differ for adolescents, the elderly, and those in the middle of their lives. It will also emphasize the ways in which different sociopolitical, ethnic, and economic factors, as well as technological innovations, influence our views on issues of sexuality and reproduction.

Dianne Bartels

University of Minnesota Suite N504 Boynton 410 Church Street SE Minneapolis, MN 55455

Centers, major presenters for the conference will include:

Fax: 612-624-9108

James B. Nelson, Professor Emeritus of Christian Ethics,

Accrediting Sponsor

United Theological Seminary of the Twin Cities, who will

Department of Continuing Medical

address, “Sexual Values & Health Care: Committed

Education, University of Minnesota—

Partners or Strangers in the Night?”

Continuing education credits have been requested.

who will address, “Adolescents and Sex: What Does Ethics

Rooms are held at the Radisson

Have To Do With It Anyway?”

Metrodome (612-379-8888) at a rate

Eli Coleman, PhD, Program in Human Sexuality & Behavioral Sciences, University of Minnesota, who will address “The Third Sexual Revolution” and its impact for health professionals and policymakers.

mibc 2000

Center for Bioethics

In addition to bioethics faculty from the four sponsoring

Robert Blum, MD, MPH, PhD, University of Minnesota,

Midwest Intensive Bioethics Course

Associate Director

of $97 per night for a single or double room and at the Days Inn (612-623-3999) at a rate of $65 per

JULY 20 –22 MINNEAPOLIS Center for Bioethics University of Minnesota

Center for the Study of Bioethics Medical College of Wisconsin

Program in Medical Ethics University of Wisconsin

Medical Ethics and Humanities Program Northwestern University Medical School

night for a single or double room. Both hotels are within walking distance of the campus—

Maureen Reed, MD, Medical Director, HealthPartners,

The Radisson is located one block from the course

who will address how decisions about reimbursement

location and the Days Inn is located approximately

are made in managed care settings.

1/2 mile from the course location.

The MIBC will be hosted by the Center for Bioethics

For more information or registration materials, visit the

on the University of Minnesota campus in Minneapolis,

Center’s Web site at http://www.med.umn.edu/bioethics/

MN. The course is cosponsored by the Program in

Phone 612-624-9440, e-mail: [email protected].

Medical Ethics, University of Wisconsin, Madison; the Center for the Study of Bioethics, Medical College of Wisconsin; and the Medical Ethics and Humanities Program, Northwestern University Medical School.




Upon discovering that a man is an alcoholic, we might

Notes

think, “Better watch out for him. He’s probably

1. That is a variation on the title of Peele S, DeGrandpre

dangerous.” For male alcoholics who are overly aggressive as well

R. My Genes Made Me Do It. Psychology Today 1995:50-53,62,64,66.68.

as promiscuous, an association between alcoholism in

References

males and the supposedly genetic traits of aggressiveness

Cloninger C, Bohman M, Sigvardsson S. Inheritance of

and promiscuity brings back the old excuse that “Hey,

Alcohol Abuse: Cross-Fostering Analysis of Adopted

I’m a guy. I can’t help myself.” Rearing its ugly head in

Men. Archives of General Psychiatry 1981;38(8):861-868.

the literature on genetics and alcoholism is the view that some men are simply programmed to be abusive and insensitive. The subject of gender and alcoholism has received little attention from feminist bioethicists, but not for a lack

Type I and Type II Alcoholism: An Update. Alcohol Health & Research World 1996;20(1):18-23. Gilligan S, Reich T, Cloninger C. Etiologic Heterogeneity in Alcoholism. Genetic Epidemiology 1987;4(6):395-414.

of ethical content of interest to them. The need for

Heath A, Slutske W, Madden P. Gender Differences in the

greater feminist input in that area is substantial, I think,

Genetic Contribution to Alcoholism Risk and to Alcohol

especially given the expanding authority of genetic

Consumption Patterns. In Wilsnack R, Wilsnack S, et al

science. A feminist analysis can raise awareness about

(eds.) Gender and Alcohol: Individual and Social

the potentially harmful social implications of genetic

Perspectives. New Brunswick, NJ: Rutgers Center of

findings that link alcoholism with stigmatizing gender

Alcohol Studies, 1997.

identities.

Hill S. Neurobiological and Clinical Markers for a Severe Form of Alcoholism in Women. Alcohol Health & Research World 1995;19(3):249-256. Mahowald M. Behavioral Genetics and Alcohol Consumption in Women. New York: Oxford University Press, 2000. Peele S, DeGrandpre R. My Genes Made Me Do It. Psychology Today 1995:50-53,62,64,66.68.



Center News Faculty

Jeffrey Kahn, PhD, MPH, has been appointed to the

Recognized as a scholar in the psychology of moral

Oversight Committee for the Geographic Information

development and nurses’ response to ethical dilemmas

System (GIS) for the Long Island Breast Cancer Study

in clinical practice, her Nursing Dilemma Test is widely

Project (LIBCSP).

used nationally and internationally. She has received numerous teaching and service awards for her work.

Patricia Crisham, PhD, RN, Faculty Associate in the

Selected Book Chapters

Center, is retiring after 25 years on the faculty in the

Crisham Nursing Dilemma Test contribution cited

School of Nursing at the University of Minnesota. Prior

in Mussen P (ed.) Handbook of Child Psychology,

to joining the faculty, she was a Clinical Specialist at

1982; In Gortner R. Volume on Cognitive Development

Psychiatric-Mental Health Nursing, Catholic University

fourth edition, 1985; In Werley H, Fitzpartrick J

of America. She received her BSN from the College of

(eds.) and in Ketefian S. Review of Nursing Research.

St. Catherine, St. Paul, MN; an MS in Psychiatric-Mental

New York: Springer Publishing Company, 1989.

Health Nursing from Catholic University of America, Washington, DC; and a PhD in Developmental Psychology from the University of Minnesota.

Crisham P. Nursing Interventions: Ethical Considerations. In Snyder M (ed.) Independent Nursing Interventions 2nd edition. New York:

In 1985, she worked with colleagues at the University

Delmar Publishers, 1992.

Patricia Crisham

of Minnesota Academic Health Center to establish the

Selected Articles

Patricia Crisham, PhD, RN

Cameron M, Crisham P, Lewis D. The Basic Nature

retires after 25 years

of Ethical Problems Experienced By Persons With AIDS:

at the University of

Implications for Nursing Education and Practice.

Minnesota.

Center for Bioethics. Since that time she has represented the School of Nursing as a Faculty Associate in the Center. In the School of Nursing, she has been responsible for ethics education for graduate programs. Her ethical decisionmaking model is used by clinicians

Journal of Professional Nursing 1993;9(6):327-335.

in health care professional curricula, ethics committees,

Duckett L, Rowan-Boyer M, Ryden M. Crisham P, Savik

and interdisciplinary task forces developing positions

K. Rest J. Challenging Misperceptions About Nurses’

on health care issues. She has published in prestigious

Moral Reasoning. Nursing Research 1992;41(6):324-331.

journals and presented papers at national conferences on ethical dilemmas in health care throughout her career.

Intersession and Fall Bioethics Courses The following bioethics courses will be offered during

Dent 6414

Law 6853

Intersession and Fall Semester at the University of

Professional Problem

Law, Medicine,

Minnesota. For more information on these courses,

Solving

and Bioethics

see the Center’s Web site (www. med.umn.edu/bioethics).

1 cr given upon

2 cr, Wolf

completion of course

PubH 5742

Intersession

Fall

PubH 5735

Dent 5412

Public Ethics/Politics


and Public Health

Solving

2 cr; Aroskar

1 cr given upon completion of course sequence, Bebeau

sequence, Bebeau

Ethics in Public Health:

Dent 6416

Practice, Policy


and Research

Solving

2 cr, Aroskar and Kahn

1 cr given upon

PubH 5743

completion of course sequence, Bebeau

Ethics in Healthcare Administration 2 cr, Aroskar 

Calendar of Events Apr 14,26 May 3,4 The Center for Bioethics Seminar Series will be held from 12:15-1:30 pm on the University of Minnesota campus, Minneapolis, MN. Speakers include: April 14–Abby Wilkerson, PhD, George Washington University. Title TBA. April 26–Mary Mahowald, PhD, The MacLean Center for Clinical Medical Ethics and University of Chicago, will speak on women and genetics. May 3–Jonathan Moreno, PhD, University of Virginia, will speak on “The Involvement of Persons with Mental Disorders in Clinical Research.” May 4–Jonathan Moreno, PhD, University of Virginia, will speak on “Medical Research and National Security During the Cold War.” For further information and room locations, contact the Center.

Apr 13,20,27 May 4,11,18 The Elder Learning Institute will hold a bioethics lecture series from 12:30-2:00 pm at the Gateway Center on the Twin Cities campus. April 13– David Mayo, PhD, will speak on “The PhysicianAssisted Death Debate: Update by an Advocate.” April 20–John Song, MD, MPH, MAT, will speak on issues in caring for homeless individuals. April 27–Speaker and title TBA. May 4–Speaker and title TBA. May 11–Beth Virnig, PhD, will speak on hospice use in the medicare program. May 18–Jeffrey Kahn, PhD, MPH, will speak on “Ethics of Research on Human Subjects.” For further information, contact the Center.



Apr 24-28

Jun 9

Jul 31-Aug 4

Muriel Bebeau, PhD will speak on “Influencing the Moral Dimensions of Dental Practice: Implications for the Professions,” at the American Educational Research Association (AERA) meeting in New Orleans. For information, call 202-223-9485 or visit their web site at: http://www.aera.net/meeting/ am2000/.

Jeffrey Kahn, PhD, MPH, will be presenting at the Transplant Society’s Annual Provincial Renal Transplant Day in Vancouver, Canada. For information, call 604-877-2144.

The University of Washington, Seattle, Department of Medical History and Ethics will hold the annual Summer Seminar in Health Care Ethics. For information, call 206-616-1864 or e-mail: [email protected].

May 13 Jeffrey Kahn, PhD, MPH, will participate on a panel discussion “The Ethics of Living Donation” at the ASTS (American Society of Transplant Surgeons) Transplant 2000 Conference, Chicago, IL. For information, call 856-608-1106.

May 19 Jeffrey Kahn, PhD, MPH, will speak on “Clinical Research Ethics: The Move from Protection to Access.” Dianne Bartels, RN, MA, will address genetic issues in “Ethics and the Patient Experience in Clinical Research.” Both presentations will be held at Park Nicollet Clinic, St. Louis Park, MN. For more information, call 612-993-3538.

May 23 Jeffrey Kahn, PhD, MPH, will deliver the Samuel G. Dunn Lectureship for the Humanities, entitled “Responsible Research in the Age of Biotechnology” at the University of Texas Medical Branch, Galveston, TX. For information, call 409-772-2376.

Jun 12-16 The University of Washington, Seattle, Department of Medical History and Ethics will sponsor a course “Ethics of Research with Humans: Past, Present, and Future.” For information, call 206-616-1864 or e-mail: [email protected].

Jun 19-22 The Center for Bioethics in partnership with the American Society on Aging, and the Minnesota Area Geriatric Education Center, presents “The Upper Midwest Summer Series on Aging,” Concordia University, St. Paul, MN. For information, call 415-974-9600, fax 415-974-0300 or e-mail: [email protected].

Oct 21-22 Jeffrey Kahn, PhD, MPH, will speak on ethical issues at the American Society for Reproductive Medicine Annual Meeting, San Diego, CA. For information, call 612-627-4564.

Nov 16-18 The University of Nijmegen, The Netherlands, will hold an Advanced European Bioethics Course, “Ethics and Genetics.” Specialists from various countries will discuss ethical aspects of genetics. For information, call 0031-24-3615320, fax 0031-24-3540254, or e-mail: [email protected].

Jul 20-22 The Center for Bioethics will host the Midwest Intensive Bioethics Course (MIBC) 2000 in Minneapolis, MN. Co-sponsored with the Program in Medical Ethics, University of Wisconsin, Madison; the Center for the Study of Bioethics, Medical College of Wisconsin; and the Medical Ethics and Humanities Program, Northwestern University Medical School. For information, call 612-624-9440/e-mail: [email protected]/ web site: http:// www.med.umn.edu/bioethics

*TBA–to be announced

Recent Faculty Publications Articles Bebeau M, Thoma S. “Intermediate” Concepts and the

Rest J, Narvaez D, Bebeau J, Thoma S. A Neo-

Connection to Moral Education. Educational Psychology

Kohlbergian Approach. Educational Psychological Review

Review 1999;11(4):343-360.

1999;11(4):291-324.

London A. An Aristotelian Conception of Practical

Rest J, Narvaez D, Thoma S, Bebeau M. DIT2: Devising

Ethics. Kennedy Institute of Ethics Journal, forthcoming.

and Testing a Revised Instrument of Moral Judgment.

London A. Moral Knowledge and the Acquisition of

Journal of Educational Psychology 1999;91(4):644-659.

Virtue in Aristotle’s Nicomachean and Eudemian Ethics. Review of Metaphysics, forthcoming.

Visit the Center’s

Center Publications Reading Packets Center packets contain an overview of legal and ethical issues, key articles, and a bibliography. Reading packets are available for $5 each: No. 1: Organ Transplantation (August 1997) No. 2: Withholding or Withdrawing Artificial Nutrition and Hydration (July 1997) No. 3: Termination of Treatment of Adults (September 1997) No. 4: Distributing Limited Health Care Resources (April 1997) No. 5: Resuscitation Decisions (June 1997) No. 6: The Determination of Death (May 1997)

Managed Care and End-of-Life Care Packets A Center program addressing ethical issues in managed care has led to the publication of annotated bibliographies on end-of-life care that are available for $5 each. Ethical Issues in Managed Care—articles addressing ethical issues in managed care. Advance Directives— focuses on empirical research related to the dissemination, clinical use, and effects of advance directives. Palliative Care—articles describing clinical, legal, and ethical issues in pain control for terminally ill persons and articles describing and comparing hospice care to conventional care for terminally ill persons.

Web site at

Reports

Ordering Information.

In October 1998, the Center organized a meeting that brought together representatives from Minnesota’s health care organizations to address implementation of Minnesota’s health care directive law. To receive a copy of the proceedings “Summit on Implementing Minnesota’s New Health Care Directive Law” contact the Center. This report is available at no charge.

To order reading packets or

http://www.med.umn. edu/bioethics.

reports, make checks payable to:

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No. 8: New Frontiers in Genetic Testing and Screening (August 1999)

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The Summer 2000 Bioethics

Faculty and Staff at the Center

Examiner submission deadline is June 2. Letters to the editor, correspondence, articles, and

Center Faculty

Susan M. Wolf, JD

Rosalie Kane, DSW

Grants Coordinator

Jeffrey Kahn, PhD, MPH

Professor of Law and Medicine University of Minnesota Law School and Center for Bioethics; Director, Joint Degree Program in Law, Health & the Life Sciences

Professor, Division of Health Services Research and Policy, School of Public Health Member of the Graduate Faculty, School of Social Work University of Minnesota

Thomas Schenk

Mila Aroskar, RN, EdD

David Mayo, PhD

Administrative Aide

Associate Professor, Division of Health Management and Policy, School of Public Health, University of Minnesota

Professor, Department of Philosophy, University of Minnesota, Duluth

Karen Howard

Gregory Plotnikoff, MD, MTS

Justin duRivage

Minnesota, Suite N504

Director Associate Professor, Department of Medicine, University of Minnesota Medical School; Division of Health Services Research and Policy, School of Public Health; Department of Philosophy, University of Minnesota

Boynton, 410 Church Street SE,

Dianne Bartels, RN, MA

announcements should be addressed to: Bioethics Examiner, Center for Bioethics, University of

Minneapolis, MN 55455-0346. E-mail: [email protected]

The Bioethics Examiner is produced quarterly by the Center for Bioethics, University of Minnesota, free of charge. The editorial staff has sole authority over and responsibility for the content of this publication. We welcome comments, letters, and contributions. No part of this publication may be reproduced in any form, without the express written consent of the Center for Bioethics.

Associate Director

Carl Elliott, MD, PhD Director of Graduate Studies, Center for Bioethics; Associate Professor, Department of Pediatrics, University of Minnesota Medical School; Department of Philosophy University of Minnesota

Faculty Associates

Muriel Bebeau, PhD Professor, Department of Preventive Sciences, School of Dentistry University of Minnesota

Ronald Cranford, MD

Professor, Center for Bioethics; Department of Medicine, University of Minnesota Medical School

Professor of Neurology, University of Minnesota Medical School Associate Physician, Department of Neurology, Hennepin County Medical Center

John Song, MD, MPH,MAT

Patricia Crisham, PhD, RN

Assistant Professor, Center for Bioethics; Assistant Professor, Department of Medicine, University of Minnesota Medical School

Associate Professor, School of Nursing University of Minnesota

Steven Miles, MD

University of Minnesota Suite N504 Boynton 410 Church Street SE Minneapolis, MN 55455-0346

Assistant Professor, Internal Medicine and Pediatrics, University of Minnesota Medical School; Medical Director, University of Minnesota Center for Spirituality and Healing; Staff Physician, Community-University Health Care Center

Administrative Staff Candace Holmbo Administrator

LeeAnne Hoekstra

Principal Secretary

Information Technician

Research Assistants Charles Good Remo Ostini Susan Parry Anne Swenerton Elizabeth Trice Stephanie Walters

Beth Virnig, PhD, MPH Assistant Professor, Division of Health Services Research and Policy, School of Public Health University of Minnesota

Post-Doctoral Fellows Alex London, PhD Carolyn McLeod, PhD

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