Learning More about Bioethics

Are you interesting in knowing more about bioethics? Here is a resource.

The following is a copy of a page on my inactive since July 2004 "Bioethics Discussion Pages" which was prepared by an ethicist for a university web-based Masters program in bioethics. I posted it, with the ethicist's permission, on my "Pages" in 2002 and I think the material is still of value almost 7 years later. Hopefully all the links, addresses and phone numbers are still currently accurate and active. If not, please let me know at DoktorMo@aol.com ..Maurice.

Bioethics: History & Resources
Mark G. Kuczewski, PhD.
Neiswanger Institute for Bioethics & Health Policy
Loyola University Chicago Stritch School of Medicine.

[Moderator's Note: This lecture is one in a series that is used in their Web-based MA in Bioethics and Health Policy Program. The contents below has not been edited for presentation here. See http://bioethics.lumc.edu for further details of the Program]

Objectives:

At the end of this session, participants should be able to:

1. identify several of the historical roots of contemporary bioethics
2. identify major resources for procuring information on pertinent ethical questions including major reference works, professional societies, and leading journals
3. apply these resources to a practice task and analyze how the resources can assist in meeting your personal educational objectives.

The lecture will help you to reach these objectives by identifying:

1. Key terms and their definitions including medical ethics, bioethics, and medical humanities
2. The difference between contemporary bioethics and traditional bioethics
3. Some major events that could qualify as the birthplace of contemporary bioethics
4. Journals, bibliographic resources, Web sites, and professional societies that can assist in study and research of contemporary bioethical issues.

Following the online lecture, two questions are provided (a "Quiz") that will serve as practice to gain facility in the use of these multifarious resources.


Readings: Albert R. Jonsen, "The Birth of Bioethics: The Origins of A Demi-Discipline," Medical Humanities Review, 2(1): 9-21, 1997.

Suggested Further Reading:

Albert R. Jonsen, The Birth of Bioethics, New York: Oxford University Press, 1998. ISBN: 0195103254

"The Birth of Bioethics," Special Supplement, Hastings Center Report, 23(6), 1993, Includes articles by Albert R. Jonsen, Shana Alexander, Judith P. Swazey, Warren T. Reich, Robert M. Veatch, Daniel Callahan, Tom L. Beauchamp, Stanley Hauerwas, K. Danner Clouser, David J. Rothman, Daniel M. Fox, Stanley J. Reiser, and Arthur L. Caplan.
Lecture
Terminology: Medical Ethics, Bioethics, Medical Humanities

Medical Ethics -- ethics of the physician-patient relationship, provider-patient relationship, includes all general duties a provider has to a patient, e.g., duty help the patient and avoid harming him or her, as well as specific rules of conduct, e.g., duties of confidentiality


Bioethics -- literally "life ethics." It is usually used in a way that includes medical ethics as a subset. (For this reason, you also see the term "biomedical ethics.") As the more general category, bioethics seems to include additional issues that are not necessarily a part of medical ethics, e.g., research ethics, ethical issues related to new scientific techniques such as cloning, and environmental policy. In general usage, persons may sometimes try to contrast bioethics with medical ethics by seeing the former as a more general and philosophical approach to the same issues that the latter considers from a strictly clinical case-oriented approach. For instance, we can talk about ethical issues related to abortion from a general philosophical approach, e.g., what kind of society do we become if abortion is a frequently used method of birth control? Or a clinical perspective, e.g., What right does the doctor have to impose treatment on a dying woman in order to try to bring a fetus to viability?


For our purposes, we will see bioethics as a general category of which medical ethics is a subset. When talking about issues in medical ethics, we will often use the terms interchangeably.
Medical Humanities -- A term that was initially coined to cover philosophical, literary, and humanistic approaches to problems in medicine. As such, medical humanities was thought to include bioethics since ethics is an area of study in philosophy and philosophy is in the humanities. However, the usage of the term medical humanities has become more specialized. Now it mainly refers to the use of literature, poetry, and film to increase appreciation for the humanistic, interpersonal, or empathetic aspects of medicine.
(II) When and where was bioethics "born"?

Candidates:

* 1962 Life magazine article by Shana Alexander on Seattle Artificial Kidney Program.
* 1973 Roe v. Wade- seldom cited as bioethics' birth
* 1973 Fetal Tissue debate
* 1974 The Tuskegee Syphilis Study exposed
* 1975 The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.
* 1976 Quinlan Case

Clearly, questions of how physicians should conduct themselves toward patients were considered as early as the time of Hippocrates, several centuries before the birth of Christ. Similarly, questions of life and death, including reproductive choices such as infanticide and abortion, have been with the human race for several thousand years. Philosophers and theologians have even given systematic treatment to them in various eras, especially the Medieval period. Therefore, if we are talking about the "Birth of Bioethics" as being somewhere between 1962 and 1976, we are presupposing that contemporary bioethics is different from medical ethics as it evolved throughout the ages. What's the case for this?


Ethicist Al Jonsen's answer is that prior ages thought about medical ethics in a very traditional way, e.g., as (1) part of ethics or the (2) standard practices of the culture/craft of medicine. As a result, medical ethics was a specialized discipline that was the concern of academic philosophers and theologians or physicians. It was not necessarily a part of public discourse, a concern of the populace at large.


Jonsen terms contemporary bioethics a "demi-discipline," a half-discipline. It works within a larger picture that is public discourse or public policy.


The demi-discipline: gathers a variety of types of persons who collect a plethora of facts, who listen to advisors and to each other, and move the debate toward closure (recommendations).


The public discourse: uses the reports and publications of those in the demi-discipline as part of the discussion that takes place in a variety of venues including law courts, legislative systems, professional societies and their committees, health-care institutions, and the media.


You can see that if contemporary bioethics is conceived as an interaction between people who make a kind of interdisciplinary study of certain issues and a process of public discourse about these issues, that bioethics genuinely was born in the second half of the twentieth century. The possible places of birth include several good candidates.


The attention the Seattle Artificial Kidney Program received certainly demonstrated that controversies involving life-saving medical technologies could command widespread public attention. However, the response to the problem of rationing such technologies based upon unwarranted social judgments was for Congress to simply allocate funds for everyone to receive this technology. No specialized groups were convened to study the problem or to contribute to the public deliberation. The demi-discipline had not yet emerged.


By the time of the famous Supreme Court decision in the case of Roe v. Wade, many academics were writing scholarly studies that were meant to contribute to the public discourse on the controversial issues such as abortion and the Supreme Court was able to draw upon several of these sources in its reasoning about this case (see especially Daniel Callahan, Abortion: Law, Choice, and Morality, New York: Macmillan, 1970.). However, few bioethicists are willing to claim the field's lineage in this controversial issue. Bioethics has often made advances by seeking issues on which people will compromise rather than to focus on such an intractable problem.


As a result, Jonsen is certainly correct in that the public debates and scandals that led up the work of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research probably are the strongest candidates for the birth of the field. In these instances, we have a public debate about controversial issues (e.g., the use of not yet dead fetuses and/or fetal tissue in experimentation) and public scandals (i.e., the Tuskegee Syphilis Study) and a call for "experts" to come together to make public policy recommendations. The way in which they proceeded has become legendary in the field and exemplifies bioethics as a demi-discipline that contributes to the public discourse. The principles the Commission enunciated in the Belmont Report and the guidelines they set forth in their succeeding reports still guide biomedical research in the U.S. And, of course, this is a beginning to which bioethicists are willing to lay claim.
(III) Resources

Bioethics is an interdisciplinary pursuit that embraces contributions from medicine, philosophy, law and other fields such as the social sciences. As a result, relevant materials are often found in the medical literature, law reviews, and some philosophical journals.
Journals: General Bioethics Journals

* Hastings Center Report -- probably the most widely read of the bioethics journals; not especially clinically oriented.
* American Journal of Bioethics (visit www.bioethics.net) - AJOB is a new and hot journal. It’s format is unique in that it typically has 2 target articles which are each followed by about 15 commentaries.
* Journal of Clinical Ethics
* Kennedy Institute of Ethics Journal
* Journal of Medicine and Philosophy
* Bioethics (Based in Australia)
* Theoretical Medicine and Bioethics (Based in the Netherlands)

Bioethics Journals for Ethics Committee Members:

* Cambridge Quarterly of Healthcare Ethics -- excellent journal but can be rather theoretical in tone.
* HEC Forum -- probably the most successful at being pitched to such an audience.

Bioethics Journals with a Legal Emphasis: (Both of the following journals are available with membership in the American Society of Law, Medicine, and Ethics (ASLME))

* Journal of Law, Medicine, & Ethics
* American Journal of Law and Medicine

Medical Journals that Frequently Feature Articles on Bioethical Issues:

* Journal of the American Medical Association (JAMA)
* New England Journal of Medicine (NEJM)
* Annals of Internal Medicine
* Archives of Internal Medicine

[Note: The American Medical Association (AMA) maintains a web-site that will allow you to search JAMA and the Archives of Internal Medicine by keyword.]

Bibliographic Resources: Internet-Based Bibliographic Sources:

* www.bioethics.net - This website is maintained by the AJOB and the University of Pennsylvania. It’s the best source of daily news related to issues in medicine, science and bioethics.

* Bioethicsline -- This is a database developed at the Kennedy Institute of Ethics, Georgetown University. Bioethicsline is part of the National Library of Medicine's MEDLARS system and online access requires that your library subscribe to this database. However, free bibliographic searches are available. One can order a printout of a search by phoning 1-800-MED-ETHX.
* NYU Literature and Medicine Database: This is especially useful to those interested in the medical humanities. A hard copy version of the database is available by sending a check or money order for $35 (U.S., $4.00 postage and handling; Foreign, $9.00) to: New York University Medical Center, Dept. of Physiology, 550 First Ave., New York, NY 10016, Attention: Dr. Felice Aull

Printed Bibliographic Materials:

* Bioethics Literature Review -- This publication reviews numerous bioethics articles from the bioethics literature and medical journals. It is published monthly. The cost is $49.00 a year and can be procured by writing to the University Publishing Group, 12 S. Market Street, Suite 300, Frederick, MD, 21701 or calling 1-800-654-8188.
* Healthcare Reform & Ethics -- This is a bimonthly review of bioethics literature. It is far less comprehensive in scope than the Bioethics Literature Review but more detailed. For subscription information, call 714-997-7907 or write PO Box 14132, Orange, CA 92863-1532.
* Each issue of the Hastings Center Report also contains a feature called "In The Literature" that abstracts recent books and articles from the bioethics and medical literature. It is distinguished from Bioethics Literature Review and Healthcare Reform & Ethics in that it's reviews include books. However, it is not as comprehensive regarding articles as the Bioethics Literature Review.
* The Kennedy Institute of Ethics also publishes a Bibliography of Bioethics. This is an annual index containing over 3,600 new citations to documents in the bioethics area. This bibliography is derived from the Bioethicsline database. The cost is $60.00 for persons in North America; $70.00 for those elsewhere. To order, call 1-800-MED-ETHX.

Encyclopedias:

* The Encyclopedia of Bioethics, Warren T. Reich (Editor), New York: Simon & Schuster Macmillan, 1995. ISBN 0-02-897355-0. Note: This is a highly regarded reference source and an excellent place to begin one's research on most topics. Most articles carry important bibliographic citations with them. (A third edition is presently in press)
* The Encyclopedia of Applied Ethics, Ruth Chadwick (Editor), Academic Press, 1997. ISBN: 0122270657. A quality source.

Listservers: (Listservers are ongoing e-mail discussion groups. Some are open to all interested parties, others require that you explain your interest and credentials.)

* MCW-BIOETHICS -- A closed list that discusses any issue in bioethics. The way to enroll is to address a message to the listserver . Skip the subject line and in body of message type: SUBSCRIBE MCW-BIOETHICS (without the parentheses). You should receive a reply asking for your qualifications since it is a closed list. Explaining that you are a student in MCW's distance learning program is invaluable. If you run into difficulties, you may wish to send a message directly to the list's moderator, Arthur Derse, MD, JD (aderse@mcw.edu)
* IRB Forum -- A listserver and website devoted to research ethics, particularly problems encountered by IRB administrators. Enrollment instructions for the listserver are available at www.irbforum.org

Professional Societies:

* There is now one main society in bioethics, the American Society of Bioethics and Medical Humanities (ASBH). It has a Web site with an online membership application. Or, you can contact the society through more traditional means: American Society of Bioethics and Humanities, 4700 W. Lake, Glenview, IL, 60025-1485, Phone 847/375-4745, fax 847/375-4777.

(I highly recommend that anyone interested in bioethics should become a member of this group. You receive the society's newsletter, receive discounts on registration for the annual meeting, and you are eligible for membership in any of the society's "affinity groups": Disability & Rehabilitation Ethics, Nursing, Hospice and Palliative Care Medicine, Visual Arts and Cultural Representation, Residency Interest Group, and Student Interest Group) Historical Note: The American Society for Bioethics and Humanities (ASBH) was formed from a merger of the three major bioethics societies:

* The Society for Health and Human Values (SHHV - a group that concentrated on the medical humanities)
* Society for Bioethics Consultation (SBC - a group that focused on clinical consultation)
* American Association of Bioethics (AAB - a group that focused on public policy)

There is still one group that has remained independent. It has a legal orientation: American Society for Law, Medicine and Ethics (ASLME); Web site, e-mail (aslme@bu.edu) or phone: 617-262-4990.

Ethics Networks:
Bioethics centers at academic health science centers sometimes try to provide resources for hospitals, nursing homes, and other health-care facilities in their region. These are known as ethics networks or HEC networks (Health-care ethics committee networks.). A network near you may be found by Web-surfing among bioethics centers or visiting the site of the American Society for Bioethics and Humanities, esp., http://www.asbh.org/links/cat1.html

Calendar of Events:
International Calendar of Bioethics Events, Division for Medical Humanities, University of Medicine and Dentistry of New Jersey - Robert Wood Johnson Medical School, P.O. Box 896, Piscataway, NJ 08855-0896, Russell L. McIntyre, Th.D., Director http://www2.umdnj.edu/ethicweb/upcome.htm

The ASBH also maintains a calendar at http://www.asbh.org/events/



Navigating the Available Resources:
It is important to realize that there is no comprehensive list of bioethics resources and centers of study anywhere. Because bioethics is a rapidly expanding field, any lists are quickly incomplete. You should try to become comfortable "surfing" the Web and enjoying the discovery of new resources. You might wish to start at the home page of the ASBH, www.asbh.org and use the "links" to other centers to visit their pages. You'll note that each center's page contains its own list of links that will facilitate further surfing. You should take note of pages that have resources that might prove helpful to you or are pertinent to your interests. You'll wish to use the "bookmark" function on your web browser to mark those pages for future access.

ADDENDUM 10-7-2009: A visitor brought the following link to my attention which has a listing of worthwhile humanities sites which would be good for further education and resources regarding bioethics.