Spring 2005                                                                                        

Andrea Bonnicksen, Zulauf 401, 753-7059, albcorn@niu.edu


In this course we will identify and discuss policy and ethical issues arising from selected biomedical technologies. Innovative technologies are important in today’s debates, and they also affect us personally if we have to make decisions about genetic testing, organ donation, assisted conception, and end-of-life medical treatments. Issues related to these technologies can be contentious, and an introduction to the science, ethics, and policies of each will contribute to informed debate about policy.


This course will also illustrate the nature of policy making in the U.S. Only rarely does Congress enact laws related to biomedical technologies. Instead, policy emerges in a slow manner with many decision makers and points of access. We will use “policy” in a broad sense to include norms and principles that guide behavior and contribute to a framework for making decisions. Policy derived from statutes, administrative codes, and recommendations from government advisory bodies can be thought of as public policy. Policy developed in the private sector, which includes clinical practices, recommendations by private advisory bodies, and professional associations, can be thought of as private policy.


In addition, the course will provide an opportunity to refine skills in stating and developing arguments. It is expected that members of the class will differ in their positions about ethics and policy. A goal is to gain practice in articulating these positions and addressing counter-arguments to them.



Required readings are found in two places: (l) a course packet for sale in the campus bookstores and (2) electronic reserves. Readings from the course packet are noted as CP below and readings from electronic reserve are noted as ER. You will receive directions for gaining access to ER materials on the first day of class. Readings are placed on ER to keep course costs low, but you are expected to print the ER readings. Study questions and other materials will be placed on NIU’s BlackBoard system.



What is meant by biomedical policy? What is meant by biomedical ethics? What principles guide discussions of biomedical ethics?


Carol Levine, “Medicine and Moral Arguments.” In Carol Levine, ed. Taking Sides (10th

            ed.). New York: McGraw-Hill/Dushkin, 2004, pp. xi-xxi. ER

Thomas A. Birkland, An Introduction to the Policy Process. Armonk NY: M.E. Sharpe,

            2001, pp. 19-21, 38-43. ER

Amy Gutmann and Dennis Thompson, “Deliberating About Bioethics.” Hastings Center

            Report 27:38-41 (May/June 1997). CP



What are the most common assisted reproductive technologies (ARTs)? Why are they used? What ethical issues arise from their use? What is current policy regulating them?


President’s Council on Bioethics, “Assisted Reproduction.” Reproduction and

            Responsibility: The Regulation of New Biotechnologies. 2004. Chapter 2. CP

Optional: for more details on ARTs see American Society for Reproduction, “A Guide to

            Patients.” www.asrm.org/Patients/patientbooklets/ART.pdf (not in ER or CP)

Excerpts from www.cdc.gov/reproductivehealth/art.htm  CP

Rebecca Mead, “Eggs for Sale.” The New Yorker, August 9, 1999, pp. 56-65. ER

Ethics Committee, American Society for Reproductive Medicine, “Financial Incentives

            in the Recruitment of Oocyte Donors.” Fertility and Sterility 74(2):216-20. CP

Lori Andrews, “The Sperminator.” New York Times Magazine. March 28, 1999. ER

“A Request for ICSI.” Hastings Center Report (March/April 2000), pp. 23-25.

Ethics Committee, American Society for Reproductive Medicine, “Child-Rearing Ability

            and the Provision of Fertility Services.” Fertility and Sterility 82:Supplement

            1:208-211 (September 2004). CP

President’s Council on Bioethics, “Executive Summary.” Reproduction and

            Responsibility: The Regulation of New Biotechnologies. 2004. CP



What are genetic inheritance patterns? What are carrier testing, prenatal genetic testing, and pre-implantation genetic diagnosis? What issues are raised by each?  

Genetics and Public Policy Center, Reproductive Genetic Testing: Issues and Options for

            Policymakers. 2004. CP

Lori B. Andrews, Future Perfect. New York: Columbia University Press, 2001, pp. 1-30.


Norman Fost, “Conception for donation.” JAMA 291(17):2125-26 (May 5, 2004). CP

Susan M. Wolf, et al., “Using Preimplantation Genetic Diagnosis to Create a Stem Cell

            Donor: Issues, Guidelines and Limits.” Journal of Law, Medicine & Ethics

            31:327-339 (Fall 2003). ER



What is meant by inheritable genetic modifications (IGMs)? Although they are still hypothetical for humans, should policy makers be thinking about how to respond to them? What, realistically, would be their impact?


American Association for the Advancement of Science, Human Inheritable Genetic

            Modifications. 2000. CP

Eric T. Juengst, “Germ-Line Gene Therapy: Back to Basics.” Journal of Medicine and

            Philosophy 16(6):587-592 (December 1991). CP

Lee M. Silver, Remaking Eden. New York: Avon Books, Inc., 1997, pp. 1-13. ER





Why is funding for ES cell research controversial? What is the administration’s funding policy for ES cell research? What are the implications of California’s Proposition to fund ES cell research at the state level? What is meant by therapeutic cloning?


President’s Council on Bioethics, Monitoring Stem Cell Research, 2004, Chapters 1 and

            3 and Appendix C. CP

Timothy Murphy, “Political Compromise on Stem Cell Research.” In Timothy F.

            Murphy, Case Studies in Biomedical Research Ethics. Cambridge MA: MIT

            Press, 2004, pp. 203-205. CP

Timothy Murphy, “No Embryonic Stem Cell Research.” In Timothy F. Murphy, Case

            Studies in Biomedical Research Ethics. Cambridge MA: MIT Press, 2004, pp.

            206-207. CP

“Stem Cell Letter to the President of the United States and Members of the United States

            Congress.” Available at www.faseb.org/ascb/pubpol/stemcellltr.htm. CP

Kyla Dunn, “Cloning Trevor.” Atlantic Monthly, June 2002, pp. 31-52. ER

Debra Greenfield, “Impatient Proponents: What’s Wrong with the California Stem Cell

            and Cures Act?” Hastings Center Report 34(5):32-35 (September/October 2004).


David Magnus, “Stem Cell Research Should Be More Than a Promise.” Hastings Center

            Report 34(5):35-36 (September/October 2004). CP



What is meant by reproductive cloning? What are arguments for and against it? Should it be banned by law? 


Dan W. Brock, “Cloning Human Beings: An Assessment of the Ethical Issues Pro and

            Con.” In National Bioethics Advisory Commission, Cloning Human Beings,

            Volume II, Commissioned Papers, June 1997, pp. E1-E23. CP

Martha C. Nussbaum, “Little C.” In Martha C. Nussbaum and Cass R. Sunstein, eds.

            Clones and Clones. New York: W.W. Norton & Co., 1998, pp. 338-46. ER



What are advance directives? Why do so few people have them? What ethical issues are raised by physician-assisted suicide (PAS)? Should other states adopt Oregon’s model legalizing PAS? What are alternatives to PAS? Should physicians refuse to provide  treatment they regard as futile?


Timothy E. Quill, “Death and Dignity: A Case of Individualized Decision Making.” New

            England Journal of Medicine 324(10):691-694 (March 7, 1991). CP

Marcia Angell, “The Supreme Court and Physician-Assisted Suicide—The Ultimate

            Right.” NEJM 336:50-53 (January 2, 1997). CP

Kathleen Foley, “Competent Care for the Dying Instead of Physician-Assisted Suicide.”

            NEJM 336:54-58 (January 2, 1997). CP

Oregon’s Death with Dignity Act” CP

Katrina Hedberg, “Five Years of Legal Physician-Assisted Suicide in Oregon.” NEJM

            348:961-64 (March 6, 2003). CP

Kate Christensen, “Kate Christensen Speaks with Pat Matheny, A Recipient of Lethal

            Medication under Oregon’s Death with Dignity Act.” Cambridge Quarterly of

            Healthcare Ethics 8(4):564-568 (1999). CP

David M. Eddy, “A Conversation with My Mother.” NEJM 272(3):179-181. CP

Timothy E. Quill, “Dying and Decision Making – Evolution of End-of-Life Options.”

            NEJM 350(20):2029-32 (May 13, 2004). CP

Barry Yeoman, “Going Home.” AARP Magazine 48:62+ (January/February 2005). CP

Steven Miles, “Informed Demand for ‘Non-Beneficial’ Medical Treatment.” NEJM

            325(7):512-515. CP

Felicia Ackerman, “The Significance of a Wish.” Hastings Center Report 21(4):27-29

 (July/August 1991). CP


APRIL 7         EXAM # 2



What is the history and policy of research governing humans? What are the four phases of clinical trials? Should the system of Institutional Review Boards be reformed? Should all clinical trials be publicly registered?


Timothy Murphy, “Oversight and Study Design.” In Timothy F. Murphy, Case Studies in

            Biomedical Research Ethics. Cambridge MA: MIT Press, 2004, pp. 1-11.

National Institutes of Health, “What is a Clinical Trial?” CP

“Common Rule.” CP  To see the contents of the Common Rule, do a google search for

            “45 CFR 46” 

Neil Dickert and Christine Grady, “What’s the Price of a Research Subject?” NEJM

            341(3:198-203 (July 15, 1999). CP

Robert Steinbrook, “Registration of Clinical Trials – Voluntary or Mandatory?” NEJM

            351(18):1820-22 (October 28, 2004). CP



How extensive is research using animals? Is there an ethics of animal research? What is current policy on animal research? Should the Animal Welfare Act be revised?


“Should Animal Experimentation Be Permitted?” In Carol Levine, Clashing Views on

            Controversial Bioethical Issues.” 10th Edition. New York: McGraw-Hill, 2004,

            pp. 224-241. ER

Elizabeth Heitman, “The Humane Care and Use of Animals in Research.” In Ruth Bulger

            et al., eds, The Ethical Dimensions of the Biological and Health Sciences. 2nd ed.

            New York: Cambridge University Press, pp. 183-91. CP

Timothy Murphy, “Use of Animals.” In Timothy F. Murphy, Case Studies in Biomedical

            Research Ethics. Cambridge MA: MIT Press, 2004, pp. 249-52 CP

American Association for Laboratory Animal Science, “Recognition and Alleviation of

            Pain and Distress in Laboratory Animals.” In Ruth Bulger et al. eds, The Ethical

            Dimensions of the Biological and Health Sciences. 2nd ed. New York: Cambridge

            University Press, pp. 203-206. CP

Timothy Murphy, “Expanding the Animal Welfare Act.” In Timothy F. Murphy, Case

            Studies in Biomedical  Research Ethics. Cambridge MA: MIT Press, 2004, pp.

            269-70. CP



Fifty years after the first successful organ transplant, what issues remain? How can organ donation rates for cadavers be increased? What can and should be done to protect living donors?


Ellen Sheehy, et al., “Estimating the Number of Potential Organ Donors in the United

            States.” NEJM 349(7):667-674 (August 14, 2003). CP

Browse through www.giftofhope.org.

Francis L. Delmonico, et al., “Ethical Incentives – Not Payment – for Organ Donation.”

            NEJM 346(25):2002-05 (June 20, 2002). CP

“Uniform Anatomical Gift Act – Illinois Compiled Statutes.” 755 ILCS 50. CP

“Organ Donation Request Act – Illinois Compiled Statutes.” 755 ILCS 60. CP

Browse through www.livingdonorsonline.org.

Arthur J. Matas, et al., “Nondirected Donation of Kidneys from Living Donors.” NEJM

            343(6):433-36 (August 10, 2000). CP

Norman G. Levinsky, “Organ Donation by Unrelated Donors.” NEJM 343(6):430-431

            (August 10, 2000). CP

Rebecca D. Penz, et al., “Designing an Ethical Policy for Bone Marrow Donation by

            Minors and Others Lacking Capacity.” Cambridge Quarterly of Heathcare Ethics

            13(2):149-55 (Spring 2004). CP

“Three Patients, Two Hearts.” Hastings Center Report (September/October 1998), pp.

            20-21. CP




MAY 12                      EXAM # 3


Grading policy:

Grades will be based on three exams worth 50 points each, two short papers worth 15 points each, and a participation and attendance grade worth 20 points:

            Exam 1                                                 50 points

            Exam 2                                                 50 points

            Exam 3                                                 50 points

            Short paper 1                                                   15 points

            Short paper 2                                                   15 points

            Attendance and participation                             20 points

            TOTAL POINTS POSSIBLE                        200 points

Grading scale: 180-200 = A; 160-179 = B; 140-159 = C; 120-139  = D; below 120 = F



The exams will be short answer and essay. A portion of each may be take-home. Make-up exams will be given only for documented serious illness or a death in the family and only if you contact me AHEAD of the exam (753-7059 -- leave a message if necessary).



All class members are expected to read the material before it is covered in class and participate in discussions based on the readings. To encourage careful reading and informed discussion based on the reading, 20 points will be allocated as follows.

18 – 20 points = regular, informed participation

                                                                       regular attendance (3 or fewer absences)

16 – 17 points = occasional and thoughtful participation

                                                                                  attendance (4 or fewer absences)

14 – 15 points = attendance (5-6 absences)

12 – 13 points = infrequent attendance (7-8 absences)

10 – 11 points = rare attendance (9 absences)

5            points = 10 or more absences

To make all have a chance to contribute I will occasionally call on students. I also appeal to the grace of individuals who are more talkative to raise their hands to be recognized before speaking so that all students may be given the opportunity to contribute. I will also give occasional short optional internet assignments. Thoughtful written responses will count toward class participation.



The papers will let you do independent research on subjects of interest to you. Each will be 5-8 typed double-spaced pages and will be due February 15 and April 14. Select topics from the categories below, so each paper is from a different category. Papers should be thoughtful, carefully documented, and well written. They should relate to course topics. Where possible, please hand in copies of sources used.


U.S. Congress

Go to http://thomas.loc.gov and do a search for a bill (proposed law) in the 106th, 107th,  or 108th Congress related to a topic of interest (e.g., organ donation, physician-assisted suicide, hospice care). Select one that is manageable and understandable to you. In your own words, (l) summarize the purpose and content of the bill, (2) give its legislative history (e.g., who sponsored it? to which committee[s] did it go? was it voted on in Congress?), and (3) provide a critique of it (what are its merits? what are its drawbacks?)


Political activity: interest groups 

Identify 2-3 interest groups that have developed position statements and/or engaged in lobbying activity about a biomedical topic (e.g., ES cell research or animal research). Use the internet to learn more about the tactics and positions of the groups. It would be most interesting to find groups with different positions (e.g., Juvenile Diabetes Association or Christopher Reeve Foundation supporting ES cell research and Do No Harm opposing it). In your write-up, (l) briefly describe the groups, (2) summarize their positions on the topic, and (3) critically compare and evaluate their positions and strategies.


Policy development: professional associations

Select a topic and, using the internet, gather position or policy statements of 1-3 professional associations about it. Professional associations include the American Medical Association (the Council on Ethical and Judicial Affairs produces statements), American Society for Reproductive Medicine (the Ethics Committee and the Practice Committee produce statements), American Bar Association, and American Association for the Advancement of Science. In your write-up, (1) briefly describe the associations, (2) summarize the position statement(s), and (3) provide a critique of the position (what are merits and drawbacks?).


Family interviews

Select a topic of interest and interview 3-5 members of your family about it. For example, you might interview your family members about advance directives and use a sample advance directive as a starting point. You will need to do enough advance research to answer questions they might have and to keep the discussion focused. In your write-up, include the problem at issue, the responses to the questions, and comparisons and contrasts among the family members.


Career exploration

Do an internet search to identify three interesting employment positions in the U.S. appropriate for a person who has received a B.A. in a social science with a special interest in biomedical policy. One of these may be an internship. You might try websites of the federal government (e.g., National Institutes of Health), professional associations (e.g., American Association of Tissue Banks), nonprofit organizations (e.g., giftoflife.org), corporations (e.g., Merck, Inc.), and/or industry organizations (e.g., state branches of Biotechnology Industry Organization). Describe the positions, specify where you found them, and mention what attracts you (or not) to the positions. What will you bring to this position? What will you have to learn on the job?


Important dates:

February 15                                                                                                     Paper 1

February 24                                                                                                      Exam 1

April 7                                                                                                                                      Exam 2

April 14                                                                                                            Paper 2

May 12                                                                                                             Exam 3



You are asked to arrive on time. Late arrivals are very disruptive. If lateness becomes a problem during the semester, I will close the door and post a note requesting no one to enter. If you have an appointment that requires you to leave early, let me know ahead of time and then sit in a chair near the door. Please turn off cell phones before class begins. Do not leave and then return after receiving a phone call. 


Other information:

CAAR.-- NIU is committed to making reasonable accommodations for students with documented disabilities. Students with disabilities that may have some impact on their coursework and for which they may need accommodation should contact the Center for Access-Ability Resources (CAAR) on the fourth floor of the Health Services Building during the first two weeks of the semester.


Paper awards.-- The Department of Political Science annually recognizes outstanding undergraduate papers written in conjunction with 300-400 level political science courses (all majors are welcome to compete). Winners are expected to attend the Department’s spring graduation ceremony where they will receive a certificate and $50.00. Submit three papers from any undergraduate political science class to a department secretary in Zulauf 315 by February 28. All copies should have two cover pages – one with the student’s name and one without. Only papers written in the previous calendar year (2004) can be considered for the 2005 award. However, papers completed in the current spring semester are eligible for the 2005 competition even if the author has graduated.


Website. -- You are encouraged to consult the Department of Political Science website (http://polisci.niu.edu) to help you contact faculty and staff, explore graduate programs and career options, and track department events and activities.