EDUC 391
Ethics and the Human Genome

Syllabus
Spring 2009
  ***In progress***
Version as of 8:00 p.m. 5/05/09

|| Objectives || Course Requirements || Grading || Writing Fellows ||
|| Policy on Cheating || Policy on Illness ||
|| Quick Calendar of Assignments || Weekly Schedule of Reading and Writing ||
|| Required and Recommended Readings ||

Course Objectives

This course is a Freshman Honors Colloquium. As such, it emphasizes class discussion and requires considerable writing. The aim is to develop your thinking and writing skills while sharing an intellectual adventure into a contentious arena—the ethics of genetic research.

By 2003, just 50 years after discovering of the double helix, scientists had mapped the entire human genome. This is one of the scientific triumphs of the Twentieth Century, yet it also poses some deeply unsettling political and moral challenges. Some people welcome its possible benefits to human health and well-being, but others fear that the new genetic knowledge and technologies will threaten our freedoms and degrade our humanity. This course will examine the wide range of ethical issues associated with genetic research and technologies. Students will first get a basic grounding in different ethical philosophies, from early Greece to modern times, as well as in the genetic science involved. From that foundation, they will then analyze specific questions often debated in the press, movies, literature, and Congress, such as privacy, discrimination, stigmatization, new medical therapies and reproductive technologies, genetic engineering, and cloning.

We will carefully distinguish the scientific search for facts (what “is”) from the moral and political debates over how we should respond to them (what “ought to be”). This is very important. When reviewing the science, we will assess whether claims about facts are supported by evidence and logic, not wishes and presumptions. How citizens and policy makers ought to deal with the facts is an entirely different matter, however. There are always different possible choices, and citizens and policy makers will inevitably disagree about which ones are best, depending on their own interests and values. The new genetic knowledge and technologies are creating very difficult choices for us. Science can help us understand what our choices are but it can never tell us which to choose. That is what the democratic process is for—negotiating our choices. We will therefore explore alternative moral perspectives on the choices that we, individually and collectively, ought to make.

Course Requirements

• There will be three papers. You will rewrite the first two. Rewriting is more than just a cosmetic touch-up. It involves rethinking, too. Usually lots of it. A Writing Fellow will be available to assist you with all papers, including the rewrites. See the schedule below for when papers and rewrites will be assigned and due. All papers and rewrites must be typed, double-spaced, proofread, and stapled--—and pages numbered. You can use any standard bibliographic style for your references.
• In addition to the graded assignments, there will be weekly pass-fail writing assignments based on the readings for that day. I much prefer but do not require that these assignments be typed. Pass-fail assignments for a particular day are always finalized by the end of the prior class.
• You will be expected to attend class, have done your readings, and regularly participate in class discussion. Your participation grade is enhanced by a willingness to take intellectual risks in class, asking good questions, facilitating discussion among your classmates, and bringing pertinent news articles and observations to class. Being prepared also includes bringing the day's readings to class, because we will sometimes turn to them during our discussions.

Table of Contents

Grading

• 75% Papers
• 25% Rethink/Rewrite 1
• Note: You must turn in the first versions of Papers 1 and 2 on time, or I will subtract points from your grade for the rewrite.
• 25% Rethink/Rewrite 2
• 25% Paper 3
• 10% Planning and leadership of the topic for “your week”
• 15% Class participation (doing pass-fail writing assignments, attending and being prepared for class every day, being a fully contributing member of your research team, raising good questions in class).
• I grade using the plus-minus system.

Writing Fellows

This course, like other Freshmen Honors Colloquia, participates in the Honors Program's Writing Fellow Program. Writing Fellows are UD undergraduates who have taken a special course in peer tutoring of writing.

• Fellows come from many majors, and are not intended to know the subject matter. They do not comment on the content of your papers. Rather, they work with you, one-on-one, to help you improve your writing. (I will give you feedback on the relevance, accuracy, and completeness of the content.) Fellows do not edit or correct your papers. Rather, they help you formulate, organize, and support your ideas, among other things mentioned below. Our objective is not just for you to end up with a better paper, but to become a better, more self-aware writer!
• Here is the fellowing process we follow in this class.
• Paper 1:
• You will turn in two copies of your paper, one to me and one to your writing fellow. You will also bring with you a completed Writer Response form for your fellow. It gives the fellow helpful information when going through your paper.
• NOTE: Your first version is not a "draft!" It is your first best effort. If it's not, then you are wasting my time and the fellow’s, and you are less likely to end up with a satisfactory result.
• One week after you turn in the paper, you will get feedback on it from the writing fellow.  Fellows do not give any grades.
• You will have one week to rethink and revise your paper. During this time you will meet for a one-half hour conference with your fellow to discuss how you want to revise your paper. You will turn in two copies of your second version.
• The conference for this paper is mandatory, and you must notify the fellow ahead of time, if possible, when you cannot keep your appointment. You must then reschedule it.
• I will return your revision to you in one week, with feedback and a grade.
• You may seek advice from either the writing fellow or me, or both, anytime during this process.
• Paper 2:
• Exactly the same process as for Paper 1.
• Paper 3:
• There is no mandatory conference, but I strongly encourage you to meet with your writing fellow because you will not be rewriting this paper.
• Fellows use a variety of practices to help students with their writing, depending on the stage of the writing process and students' needs. For example, they can help you
• brainstorm thoughts for a paper and interpret the writing assignment
• revise your drafts by helping you with organization, tone, the thesis statement, proper citation, and the like
• use a variety of stylistic techniques to polish near-final drafts.
• Writing fellows are a wonderful and rare resource. Make good use of this opportunity.

Policy on Cheating

• Please familiarize yourself with the University's statement on academic dishonesty in the Student Code of Conduct, especially as it pertains to plagiarism.
• I prosecute cheating and I have won all cases so far.

Table of Contents

Policy on Illness

If you have a contagious illness, please do not come to class. Stay home and rest. Just let me know as soon as you can why you will miss, or have missed, class. Your classmates and I can help you catch up.

Quick Calendar of Assignments

Clicking on the date in the calendar will take you to that date's readings and P/F writing assignment. (Clicking on the day in the Weekly Schedule, further below, will also take you to that day's assignment.)

 

Weekly Schedule of Reading and Writing

OVERVIEW: AIMS AND ETHICS IN THE NEW GENOMIC WORLD

Day 1 (2/10) Introduction

• Was handed out in class: “Born to run,” in the New York Times

Day 2 (2/12)    Portraits of hope and fear in the media

• You search a newspaper

Day 3 (2/17) "Ethics"--what does that mean?

• “Ethics,” Internet Encyclopedia of Philosophy
• Was handed out in class: “Neanderthal genome hints at language potential but little human interbreeding,”2/13/09.

Day 4 (2/19)    Overview of genomic methods and issues

• The Economist's Survey of the Human Genome
• Kass'’ “How Brave a New World?” (no need to read the first column of the article

SCIENTIFIC DREAMS

Day 5 (2/24) Variation in individuals’ motivations for scientific advancemen

• Motivations of scientists themselves: “Chapter 2: Scientific aspirations” in <>Being Human. The chapter contains excerpts about five scientists. Please read at least these three scientists: Descartes, Wilson, and Watson. The other two are really fascinating (you won’t believe Archimedes!), though for quite different reasons.
  • Archimedes, pp. 75-79 (Lives of the Noble Grecians and Romans, by Plutarch)
  • Descartes, pp. 80-86 (Discourse on Method)
  • E. O. Wilson, pp. 87-102 (Naturalist)
  • Richard P. Feynman, pp. 103-110. (Surely You'’re Joking, Mr. Feynman: Adventures of a Curious Character)
  • James D. Watson, pp. 111-118 (The Double Helix: A personal account of the discovery of the structure of DNA)
• Motivations of patients and their families: Please read both these stories about parents whose babies have life-threatening illnesses. (Note: these stories may be a bit disturbing; the latter is a bit long)
  • Witness, by Richard Selzer
  • “People like that are the only people here: Canonical babblings in peed onk” (peed onk=pediatric oncology), by Lorrie Moore
• Handed out in class: “Political agendas in the guise of pure science,” NYT, 2/24/09, pp.; D1, D2, by J. Tierney.

Day 6 (2/26)    Pursuit of medical utopias

• Medical utopias: Ethical reflections about emerging medical technologies, by B. Gordijn, 2006.
  • Chapter 2: Basic concepts (pp. 7-14).
  • Chapter 3: Medical utopian thinking (pp. 15-38).

• Look again at the Economist’s Survey of the Human Genome

HUMAN DREAMS

Day 7 (3/3) What do the medical utopians say we want, and value?

• Readings--review again:
  • Medical utopias: Ethical reflections about emerging medical technologies, by B. Gordijn, 2006.
  • The Economist's Survey of the Human Genome

Day 8 (3/5) What do real people seek and value in life--what's missing from the medical utopias?

• No new readings for Day 8. You will do a survey.
• Start reading Brave New World. Required for Paper 1.

Day 9 (3/10) Pursuing youth and immortality-- at what price?

• Jonathan Swift's’ 'struldbrugs' in Gulliver’s Travels
• Brave New World.

Day 10 (3/12)"Brave New World"--How Relevant Today?

• No readings.

DUE: Paper 1

THE GENOME & EPIGENOME

 

Day 11 (3/17)How the genome works

 

Day 12 (3/19) How the genome works

Video on identical twins

GENETIC DIVERSITY

Day 13 (3/24) Behavior genetics: Friend or foe of equality and democracy?

• Bouchard's "And never the twain shall meet"

Day 14 (3/26) How DNA is used in forensics (Stephanie)

• "Can DNA demand a verdict?"
• DNA forensics (Human Genome Project website)
• DUE: Paper 1 rewrite

SPRING BREAK

GENETIC DIAGNOSIS, SCREENING, AND SELECTION

Day 15 (4/7) What does your future hold? A look into gene mapping (Janie, Maria)

• Gene testing (Human Genome Project website)
• Pages 53-58 on newborn and adult genetic screening (Chap. 4, "The Human Genome and Medical Practice") in your text, How the Genome Works

Day 16 (4/9) Designer babies (Maggie, Rachel)

• GenoChoice: Create Your Own Genetically Healthy Child Online!
• "How far should we push mother nature? Making babies: Technology is evolving faster than our ability to weight the cost and ethics," Newsweek Magazine, January 17, 1994.
• "Sperm bank sued under product liability law," New Scientist, 4/8/09.
• What is a designer baby? (website that gives background on science and ethics of genetic testing and design involving embryos and children)
• Gattaca, excerpt from the screenplay (not required).
• “Slippery slope to eugenics,” Slate Magazine (not required)
  • The report he criticizes: "Choices & Boundaries," 2006, Human Fertilisation & Embryology Authority, UK

GENETIC THERAPY

Day 17 (4/14) Nano-Delivery (Lisa, Robby)

• Nanotech Rx: Medical applications of nano-scale technologies, Please read pages 1-2, 8-23; glossary not required but might be useful. (ETC Group, September, 2006)
• Outline of Nanotechnology Medical Technologies NOTE: Please read and bring this with you to class.

Day 18 (4/16) Cloning (Megan, Sam)

• "Transplant first a giant leap for surgery," The Guardian, 11/19/08.
• "Cellular Division," a set of commentaries on cloning and its ethics, www.nas.org, March, 2009.
• "A cluster of ethical questions, a sidebar to the following article, p. 34.
  • FYI only. "Tiny cells, huge possibilities," Johns Hopkins Magazine, 61 (2), 28-35, April, 2009.
  • FYI only. "Monster tumor and a little (cloned) lamb" A brief history of cell engineering," a sidebar to the foregoing article, pp. 30-31.
  Cloning (Human Genome Project website)
• Due: Paper 2

Day 19 (4/21) Gene therapy clinical trials & informed consent (Brian)

• How does gene therapy work, is it safe, & what are the ethical issues?, Genetics Home Reference, National Institutes of Health (NIH)
  • Read the first 3 pages. That means you have to click 'next' twice.
• You will be given other materials in class.

Day 20 (4/23) TBA (Dr. Gottfredson will be away)

• Your fellowed papers and conference sign-up sheets will be available on the table outside Dr. Gottfredson's office, Room 219B, Willard Hall, from 11 a.m. to 5:00 p.m.

PERSONAL ENHANCEMENT

Day 21 (4/28) Strength, smarts, and beauty from pill bottles: Unnatural and unfair, or just common sense? (Paul)

• “Drugstore athletes, by Malcomb Gladwell
• "No easy answer to question that won't be going away any time soon," ESPN.com, July 2, 2008.
• Nanotech Rx: Medical applications of nano-scale technologies, , just pages 15-16.
• Pharmacogenetics (Human Genome Project website)
• Genetic enhancement (National Human Genome Research Institute, NIH)

Day 22 (4/30) Immortality and the natural process (Alex, Caleigh, Lauren)

• "When man and machine merge," from Rolling Stone.
• "Worming our way to a longer life," from Genome Sciences Center.
• "Life extension: Rolling the technological dice," from Society, 2009, 46:214-220.
  • NOTE: You have each already been given one of the following four commentaries on the foregoing article. All are in the same issue of Society.
  • "The phenomenon of death" by E. Cohen. Pages 221-223.
  • "Lost in translation" by J Shields. Pages 224-226.
  • "The past as prologue in life extension" by S. Jasanoff. Pages 232-234.
  • "Death and us" by H. Kaye. Pages 237-239.
• Optional: Excerpts from Tuck everlasting, by N. Babbitt.
• Optional: Please reread Genetic enhancement (National Human Genome Research Institute, NIH)
  • Which parts/points are relevant to life extension?

SPECIES TRANSFORMATIONS

Day 23 (5/5) -Making monsters and cyborgs--right or wrong? (Kevin, Jimmy, Mike)

For Kevin's presentation:

Human-animal hybrid embryos, BBC
• Optional: “The monster in public imagination,” Chapter 10 i n Genomics and Society: Legal, Ethical and Social Dimensions, by Gaskell & Bauer, 2006.

For Jimmy & Mike's presentation:

• "A lifelike prosthetic arm"
  • Please also watch this short video on the prosthetic arm.
• Two short stories:
  • "Masks"
  • "Period piece"

DUE: Rewrite 2

HUMANITY & HUMANISM

Day 24 (5/7) Which way human progress: Individual conscience or collection judgment?

• Speaker: Adam Kissel
• Reading: "On individuality, as one of the elements of wellbeing," Chapter 3 in On Liberty (1859) by John Stuart Mill.

Day 25 (5/12) Legal rights of participants (and their families!) in genomic studies and gene patenting (Dan)

• Human Genome Project page on Genetics and Patenting (the section called "Why Patent?")
• "Parents sue over incorrect prenatal genetic test results," PHG Foundation, 4/24/06.
• "Disclosure of genetic tests for health insurance: is it ethical not to?" The Lancet, 363(9406), 31 January 2004, pages 395-396.
• "The DNA age: Taking a peek at the experts' genetic secrets", New York Times, October 20, 2008. (discussion about families' concerns starting on page 1)
• Video: Documentary on patenting genes (hulu.com) (watch first ~20 minutes)

Day 26 (5/14) What it means to be "human" (Jaclyn, Rickie)

• Terri Schiavo (An article that favors the husband’s decision to withdraw life support)
• Lines 335-372 in Sophocles' "Antigone"
• Sonnet #147, by Shakespeare

Day 27 (5/19) Human dignity: What's lost, what's gained?

• The human dignity conspiracy," by Peter Augustine Lawler.

Finals day: Cancelled.        

 

Paper 3: DUE: May 22, in my office or mailbox by 4:00 p.m.

Required and Recommended Readings

Note: Some readings may be deleted and others added during the course of the semester. The readings (and pass-fail assignments) for any specific class will be considered final at the time of the previous class.

Required books available at UD bookstore

• Huxley, A. (1932/2006). Brave new world. New York: Harper Perennial.
• McConkey, E. H. (2004). How the genome works. Boston: Jones and Bartlett.

Table of Contents

Required and recommended articles (all online, most requiring your UD userid and password)

• Books & movies suggested by students (not listed above)
  • Awakenings (movie)
  • Dr. Moreau's Island (movie)
  • Ender’s Shadw by Orson Scott Card (book)
  • Flowers for Algernon (movie)
  • Frankenstein by Mary Shelley (book)
  • Minority Report (movie)
  • My Sister’s Keepe by Jodi Picoult (book)
  • Next by Michael Crichton (book)
  • The Island (movie)
• Human Genome Project Information (HGPI) materials
  • Behavioral genetics [URL http://www.ornl.gov/sci/techresources/Human_Genome/elsi/behavior.shtml]
  • Cloning [URL:http://www.ornl.gov/sci/techresources/Human_Genome/elsi/cloning.shtml]
  • DNA forensics [URL:  http://www.ornl.gov/sci/techresources/Human_Genome/elsi/forensics.shtml]
  • Gene testing (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetest.shtml]
  • Gene therapy (HGPI)   [URL: http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml]
  • Genetic anthropology, ancestry, and ancient human migration [URL: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/humanmigration.shtml]
  • Genetics and patenting (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/patents.shtml]
  • Genetics privacy and legislation (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml]
  • Minorities, race, and genomics (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/minorities.shtml]
  • Pharmacogenetics  [URL: http://www.ornl.gov/sci/techresources/Human_Genome/medicine/pharma.shtml]
  • Potential benefits of Human Genome Project Research (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/project/benefits.shtml]
  • The science behind the Human Genome Project  [URL:  http://www.ornl.gov/sci/techresources/Human_Genome/project/info.shtml
• News media, print or online
  • “Born to run,” New York Times “Neanderthal genome hints at language potential but little human interbreeding,”New York Times, 2/13/09.
  • “Political agendas in the guise of pure science,” ew York Times, 2/24/09, pp. D1, D2, by J. Tierney.
  • “Slippery slope to eugenics,” Slate Magazine.
    • The report he criticizes: "Choices & Boundaries," 2006, Human Fertilisation & Embryology Authority, UK
  • "Sperm bank sued under product liability law," New Scientist, 4/8/09.
• Other materials
  • “Ethics” (Internet Encyclopedia of Philosophy).
  • Medical utopias: Ethical reflections about emerging medical technologies, by B. Gordijn, 2006.
    • Chapter 2: Basic concepts (pp. 7-14)
    • Chapter 3: Medical utopian thinking (pp. 15-38).
  • “The monster in public imagination,” Chapter 10 in Genomics and Society: Legal, Ethical and Social Dimensions, by Gaskell & Bauer, 2006.
  • Nanotech Rx: Medical applications of nano-scale technologies, ETC Group, September, 2006 (pages 8-23 [ignore box on pages 10-11], 31-33, 36-46, glossary might be useful too)
  • “Safe handling of nanotechnology,” Nature, 444(16), 267-269.
  • Testing for genetic conditions,  confidentiality, and discrimination (book chapter)
  • “The larger world of nano,” Physics today, October 2008.
  • “The upright posture,” Chapter 7 (pp. 137-165) in Phenomenological Psychology, by Erwin Straus, 1966.
• Readings from Being Human, President’s Council on Bioethcs
  • “Birthmark” by Nathaniel Hawthorne
  • "“Burden and blessing of mortality"” Chapter 2: Scientific aspirations (on Archimedes, Descartes, E.O. Wilson, Richard Feynman, & James Watson)
  • “Drugstore athletes” by MalcolmGladwell.
  • Gattaca, excerpt from the screenplay
  • “Good grief: An undertaker’s reflections” by Thomas Lyn.
  • Gulliver’s Travels by Jonathan Swift (excerpt on the ‘struldbrugs
  • “Of death” by Francis Baco
  • “On meeting death cheerfully” bySeneca
  • “People like that are the only people here: Canonical babblings in peed onk” (peed onk=pediatric oncology), by Lorrie Moore
  • “Witness” by Richard Selzer
• Short stories from other books
  • “Fortitude” by Kurt Vonneg
  • “Harrison Bergeron” (story of the handicapper general) by Kurt Vonnegu
  • “Masks” by Damon Knight
• Other websites
  • Human Genome Project   (U.S. Dept of Energy)
  • Learn.Genetics--Genetic Science Learning Center, University of Utah
  • Bioethics Resources on the Web, National Institutes of Health
  • Human Fertilisation & Embryology Authority, UK
    • Hybrids and chimeras, April 2007
    • Choices & Boundaries, 2006 (brings us "where do we draw the line" issues)
  • Institute for Public Health Genetics (a major graduate program), University of Washington, Seattle
  • President’s Council on Bioethics
  • Program in Science, Ethics and Public Policy, University of Delaware

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Linda S. Gottfredson
219b Willard Hall
School of Education
College of Education and Public Policy
University of Delaware
Newark, DE 19716
(302) 831-1650 (phone)
(302) 831-6058 (fax)
gottfred@udel.edu

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This page was last modified on 03/5/09.