PHIL 280Ethics and The Human Genome ProjectSpring 2002
Professors Laura Purdy and Candace Collmer


    Rapid advances in the study of the human genome are raising a host of social, moral, political, and legal issues. What
benefits do these studies promise? What problems or costs might be associated with genetic innovations? Are the benefits
worth the costs, and can awareness of them help us innovate fairly and wisely?
 
    Applications of the Human Genome Project may help us prevent disease or enhance human capacities. But preventing disease
may mean preventing the birth of individuals with certain genetic diseases or engaging in genetic engineering to alter
genes. Both approaches raise a variety of moral issues, such as abortion, the disability rights critique, and
experimentation on unconsenting individuals. In addition, the benefits and burdens of screening and testing may fall
disproportionately on certain groups, or emphasize genetic solutions at the expense of more mundane but well-proven
measures.
    The attempt to enhance welfare by, or example, attempting to increase intelligence, strength, or beauty means
still more fundamental intrusion into the human genome. In addition, this research is, for the most part, taking place in a
privatized, corporate context that raises serious questions about privacy, ownership, and access. How can privacy be
guaranteed to protect against discrimination in the workplace or insurance? Should genes, or even whole organisms, be
patented? How can broad access to benefits be guaranteed? Forging ahead without taking account of this context raises the
possibility that the HGP and its progeny will do more harm than good.



 

Class Meets: T,Th 9:40-10:55, Cleveland 110
Professors: Dr. Candace Collmer, Zabriskie 13 and
                   Dr. Laura Purdy, Macmillan 316
Contact info: Prof. Purdy - 364-3244; 607-273-2654(home); lpurdy@wells.edu
                    Office Hours – Tues. 1-4, Thurs. 2-4; Friday morning by arrangement
Contact info: Prof. Collmer - 364-3271; 607-257-5737(home); ccollmer@wells.edu
                     Office Hours - Wed. 1:30-2:30; Thurs 11:15-12:15; Fri 11:30-12:30;
                      or other times as arranged
 

Texts:
Philip Kitcher. 1996. The Lives to Come – The Genetic Revolution and Human Possibilities. Simon & Schuster Publishing
Matt Ridley. 1999. Genome – The Autobiography of a Species in 23 Chapters. Perennial/HarperCollins Publishers.
Anthony Weston. 2002. A Practical Companion to Ethics. 2nd edition, Oxford University Press.
Selected readings from Who Owns Life?, a collection of essays to be published through the Center for Bioethics of the University of Pennsylvania
Ricki Lewis. 2001. Human Genetics – Concepts and Applications, 4th edition, McGraw-Hill. On reserve in the library
 
Attendance: Attendance is required at all classes. Should ill health, conflict with other academic events, or extenuating
circumstances keep you from class, it is your responsibility to complete the work of that session in a satisfactory manner.

 
 
Late Work: Late work (i.e. that is not handed in during class time on the day that it is due) will be accepted only if you
have made arrangements with us in advance, and will incur a 10% grade reduction.
 
 
Honor Code: We expect and require academic integrity from all students in all work.


PHIL 280 -- Spring, 2002

Ethical, Legal, and Social Implications (ELSI) of The Human Genome Project

Tentative Class Schedule (subject to modification as needed)
 
 
 
Day -
Week
Date
Topic/Activity
Assignment Due for class/ 
Quizzes, Papers, Etc.
(K=Kitcher; R=Ridley; W=Weston)
T - 1
1/29
Introduction to course;
What is the Human Genome Project?
Assign paper
 
H - 1
1/31
Moral reasoning – discuss paper and readings
1-2page paper due;W – Chapters 1,2
T - 2
2/5
Ethical problem solving
W – Chapters 3-5
H - 2
2/7
QUIZ #1 - Ethics
The Human Genome Project – what is it? What does it promise? 
Differing perspectives of it
QUIZ #1;Website: http://www.ornl.gov/hgmis
K - Chapter 1 (pp. 13-22)R – Foreword, Introduction (pp. 1-10)
Handout: Dula; Jackson (1/2 class on each)
T - 3
2/12
History of genetics/ genetic disease
Concept of genetic malady
R – Chapter 3;K – Chapter 2 (pp. 23-29)
K – Chapter 9;Handout: Culver or Berger (all)
H - 3
2/14
Basic genetics and molecular biology Determinism
K – Chapter 2
R – Chapter 4
T - 4
2/19
Determinism, genes, and environment
R – Chapters 4, 5; K – Chapter 11
Handout: de Waal (all)
H - 4
2/21
Genetic testing 
K – Chapter 3
T - 5
2/26
Concerns about genetic technology
Short video: Fragile X   testing 
K – Chapter 10
Handout: Lippman – Worrying….(all)
Handouts: Silver; Watson (all)
H - 5
2/28
Eugenics 
K – Chapters 8 (new), 9 (review)
R – Chapters 9, 21
Handouts: Editorial and response re: China (all)
T - 6
3/5
QUIZ #2 – genetics/molecular biologyVideo – "Genetically Correct: Ensuring PerfectBabies"
QUIZ #2
H - 6
3/7
The disability rights critique
Case Discussion: Deaf Parent Hypothetical
Handouts:Green; Parens & Asch (all)
Web lecture – Denise Karuth
Prepare to argue deaf case (1/2 each)
T - 7
3/12
The disability rights critique (continued)Short video: Lesch-Nyhan syndrome
Handout: Purdy -- Loving Future People 
H - 7
3/14
Genetic testing in adults – e.g. BRCA genes
R – Chapter 5 (review)
Handouts: Fasouliotis & Schenker; Geller et al.(all)
 
 
SPRING BREAK3/16-24
 

 
 
Day - Week
Date
Topic/Activity
Assignment Due for class/ 
Quizzes, Papers, Etc.
(K=Kitcher; R=Ridley)
T - 8
3/26
BRCA gene testing (continued)
Handouts: Parthasarathy; Purdy (1/2 on each)
H - 8
3/28
Midterm Exam
Midterm Exam
T - 9
4/2
Genetic discrimination, health insurance, and the law
K – Chapter 6; 
Handouts: Greely; Rothenburg (all)
H - 9
4/4
Gene therapy – what is it?
K – Chapter 5
Handouts: Hedgecoe
T - 10
4/9
**Gene therapy (continued)
Student presentations
Handouts: Anderson; Billings et al.; Marshall
R – Chapter 18
H - 10
4/11
**Enhancement
Student presentations
Handouts: Walters & Gage; McGee; Juengst;Cole-Turner
T - 11
4/16
Enhancement (continued)
Handouts: Walters & Gage; McGee; Juengst;Cole-Turner
H - 11
4/18
Stem cells 
Handouts: Scientific American article, othersTBA
T - 12
4/23
**Cloning – "Therapeutic cloning" or CRNT
Student presentations
Handouts: Lanza et al.; letters and reply;
Kass – charge to the President's Council onBioethics; Goodman editorial
H - 12
4/25
Cloning – reproductive cloning
Short video – human reproductive cloning
Handouts: Green/Shuster;Jonas;Davis; Midgley
T - 13
4/30
Science and social context
Conflicts of interest – research and funding
Handouts: Lippman – The Politics of Health; Shenk; JAMA article
H - 13
5/2
Who owns life?Propriety and Property – The Tissue Market Meets the Courts
Handouts:Andrews and Nelkin; Kolata
T - 14
5/7
Who owns life?
Patents and the Canavan gene story
Student presentations
Handouts: Merz; McGee; Merz & Cho 
H - 14
5/9
Finish up
 


FINAL EXAM – Thursday, May 16, 7-10 P.M.
PHIL 280Spring 2002
Some useful websites:
The website for information on The Human Genome Project from the U.S. Dept. of Energy:http://www.ornl.gov/hgmis/
The website for the Institute for the Study of Applied and Professional
   Ethics, Dartmouth College:
   http://www.dartmouth.edu/~ethics/elsi_index.html
   (For Denise Kurath's lecture: http://www.dartmouth.edu/~ethics/Start3.htm)
The website of the Who Owns Life? project of the Center for Bioethics of the University of Pennsylvania:
http://www.bioethics.net (and http://www.bioethics.net/whoownslife)

                     



Proposed Grading Scheme for the course:
20% -- Class participation – active participation in class discussions (every class period) is essential and is a graded
          component of this course. Of particular importance is your oral presentation and your contributions to the deaf
          parent hypothetical case
15% -- Class Quizzes – two
5% -- Short paper due second class period
20% -- Paper accompanying your oral presentation
15% -- Midterm exam
25% -- Final Exam
 

Assignment for first short paper:
Due: Thursday, January 31, 2002 (at 9:40 A.M.) -- 1-2 pp (250-500 words)
Matt Ridley claims that it would be “highly unethical” to inject the nucleus of a chimpanzee cell into an enucleated human
egg and try to keep it alive. (Ridley, Genome, p. 36)
Do you agree with his assessment? Justify your position.
 

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