EDUC 391
Ethics and the Human Genome

Syllabus (As of 4/30/12, 9:00 p.m. —watch for frequent updates)
Spring 2012

TR 11:00 a.m.-12.15 p.m.
Willard Hall, Room 319
School of Education
University of Delaware

|| 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 ||

Instructor:

Linda S. Gottfredson
(gottfred@udel.edu)
http://www.udel.edu/educ/gottfredson

Office:

Willard Hall 219B

Phone:

(302) 831-1650

Office Hours:

Tues., Thurs. 1:00-2:00 and by appt.

Writing fellows:

Alex D'Angelo (adangelo@udel.edu)

Suggestions:

Anonymous suggestion box

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.)

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Paper 1
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Paper 2
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TOCs

Paper 3
May 21

Your
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TOCs
Plan and
Self eval

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 genomic 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.

Reasonable people can disagree on the choices we will discuss. Regardless of the conclusions you reach, I want you to be able to defend them with strong logic and evidence. My major objective is to see your minds at work!

Weekly Schedule of Reading and Writing

SCIENTIFIC ENTHUSIASMS, PUBLIC HOPES AND FEARS

Day 1 (2/7)   Introduction

  • What is right and wrong?

Day 2 (2/9) Portraits of hope and fear in the media

 

  • You research a news source

Day 3 (2/14) What are ethics?

Day 4 (2/16) Divergent reactions to genomic “advancement”: Is it good or bad for us?

Day 5 (2/21) Historic pursuit of medical utopias

    1. Chapter 2: Basic concepts (pp. 7-14).
    2. Chapter 3: Medical utopian thinking (pp. 15-38).

Day 6 (2/23) What do we value? Is science neutral about 'the good'?

Day 7 (2/28)   Do real people seek and value what the medical utopians do?

Day 8 (3/1)   Beware what you seek?

Day 9 (3/6)   To what extent does the human genome define “humanness”?

 Day 10 (3/8)"Brave New World"—How relevant today?

 

EMPIRICAL REALITIES

Day 11 (3/13)  The genome: Chromosomes 3-7 (History, Fate, Environment, Intelligence, Instinct)

  • Ridley’s Genome, pp. 38-106

Day 12 (3/15)  The genome: Chromosomes X/Y-11 (Conflict, Self-Interest, Disease, Stress, Personality)

  • Ridley’s Genome, pp. 107-172

Day 13 (3/20)  The genome: Chromosomes 12-17 (Self-Assembly, Pre-History, Immortality, Sex, Memory, Death)

 

  • Ridley’s Genome, pp. 173-242

Day 14 (3/22)  The genome: Chromosomes 18-22 (Cures, Prevention, Politics, Eugenics, Free Will)

  • Ridley’s Genome, pp. 243-313
  • DUE: Paper rewrite 1

SPRING BREAK

NEW TECHNOLOGIES, NOVEL CHOICES & ETHICAL DILEMMAS

Day 15 (4/3)   Genomic ethics

Required reading:

Day 16 (4/5)   Genetic anthropology

Team: Dr. Gottfredson

Required readings:

Day 17 (4/10) Genetically modified foods (GMFs)

Team: Allie, Jared, and Tara

Required reading:

Day 18 (4/12) Criminal forensics

Team: Caitlyn, Hannah, and Ksenia

Required readings:

DUE: Paper 2

Day 19 (4/17)    Prenatal testing

Team: Becky, Jaclyn, and Nikki

Required readings:

Day 20 (4/19)   From human enhancement to prenatal enhancement

Team: Bari and Danielle

Required readings:

Day 21 (4/24)    Genetic testing for diseases: What would you do?

Team: Lissy and Rachel

Required reading:

Day 22 (4/26)   In vitro

Team: Chris and Colin

Required readings:

DUE: Rewrite 2

Day 23 (5/1)   Where will personal genome sequencing take us?

Team: Sam and Will

Required reading:

Day 24 (5/3)  Human chimeras

Team: Caren & Cassidy

Required reading:

Day 25 (5/8)  Legal issues (?)

Team: Kristen and Meredith

Required readings:

Day 26 (5/10)   Computerizing our brains?

Team: Andre

Required readings:

Day 27 (5/15)  Humanity: What's lost, what's gained?

Required readings:

Paper 3: DUE: May 21, in my office or mailbox by 4:00 p.m.

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 may use any standard bibliographic style for your references.
  • You will make a presentation to the class on the topic you select for Paper 2. You will be grouped into teams of 2-3 based on topic, and your team will be responsible for one day of class during the last half of the semester.
  • In addition to the graded assignments, there will be weekly pass-fail writing assignments based on the readings for that week. 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.

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Grading

  • 75% Papers
  • 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).

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; they do not (and are not qualified) to tell you “how good” your paper is. 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 one copy of your second version, plus the fellowed copy of the first 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

    • interpret the writing assignment
    • brainstorm thoughts for a paper
    • 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 have won all cases so far.

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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.

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.
  • Ridley, M. (2000). Genome: The autobiography of a species in 23 chapters. New York: Harper Perennial.
  • Skloot, R. (2010). The immortal life of Henrietta Lacks. New York: Crown Publishing.

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

  • Books & movies suggested by students (not already listed above)

    • AI (movie)
    • Awakenings (movie)
    • Bicentennial Man (movie)
    • Caprica (movie)
    • District 9 (movie)
    • Dr. Moreau's Island (movie, book by H.G. Wells)
    • Ender’s Shadow by Orson Scott Card (book)
    • Equilibrium (movie)
    • Flowers for Algernon (movie)
    • Frankenstein by Mary Shelley (book)
    • Gattica (movie)
    • I Robot (movie)
    • Matrix (movie)
    • Minority Report (movie)
    • My Sister’s Keeper by JodiPicoult (book & movie)
    • Next by Michael Crichton (book)
    • Prey by Michael Crichton (book)
    • The Island (movie)
    • Wall-E (movie)

  • Human Genome Project Information (HGPI) materials

o   Behavioral genetics [URL http://www.ornl.gov/sci/techresources/Human_Genome/elsi/behavior.shtml]

o   Cloning [URL:http://www.ornl.gov/sci/techresources/Human_Genome/elsi/cloning.shtml]

o   DNA forensics [URL:  http://www.ornl.gov/sci/techresources/Human_Genome/elsi/forensics.shtml]

o   Gene testing (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetest.shtml]

o   Gene therapy (HGPI)   [URL: http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml]

o   Genetic anthropology, ancestry, and ancient human migration [URL: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/humanmigration.shtml]

o   Genetics and patenting (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/patents.shtml]

o   Genetics privacy and legislation (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml]

o   Minorities, race, and genomics (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/minorities.shtml]

o   Pharmacogenetics  [URL: http://www.ornl.gov/sci/techresources/Human_Genome/medicine/pharma.shtml]

o   Potential benefits of Human Genome Project Research (HGPI) [URL: http://www.ornl.gov/sci/techresources/Human_Genome/project/benefits.shtml]

o   The science behind the Human Genome Project  [URL:  http://www.ornl.gov/sci/techresources/Human_Genome/project/info.shtml

  • News media, print or online

    o   “Born to run,” New York Times

    o   “Neanderthal genome hints at language potential but little human interbreeding,”New York Times, 2/13/09.

    o   “Political agendas in the guise of pure science,” ew York Times, 2/24/09, pp. D1, D2, by J. Tierney.

    o   “Slippery slope to eugenics,”.

    §  The report he criticizes: "Choices & Boundaries," 2006, Human Fertilisation & Embryology Authority, UK

    o   "Sperm bank sued under product liability law," New Scientist, 4/8/09.

  • Other materials

    o   “Ethics” (Internet Encyclopedia of Philosophy).

    o   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).

    o   “The monster in public imagination,” Chapter 10 in Genomics and Society: Legal, Ethical and Social Dimensions, by Gaskell & Bauer, 2006.

    o   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)

    o   “Safe handling of nanotechnology,” Nature, 444(16), 267-269.

    o   Testing for genetic conditions,  confidentiality, and discrimination (book chapter)

    o   “The larger world of nano,” Physics today, October 2008.

    o   “The upright posture,” Chapter 7 (pp. 137-165) in Phenomenological Psychology, by Erwin Straus, 1966.

  • Readings from Being Human, President’s Council on Bioethcs

    o   “Birthmark” by Nathaniel Hawthorne

    o   "“Burden and blessing of mortality"”

    o   Chapter 2: Scientific aspirations (on Archimedes, Descartes, E.O. Wilson, Richard Feynman, & James Watson)

    o   “Drugstore athletes” by MalcolmGladwell.

    o   Gattaca, excerpt from the screenplay

    o   “Good grief: An undertaker’s reflections” by Thomas Lyn.

    o   Gulliver’s Travels by Jonathan Swift (excerpt on the ‘struldbrugs

    o   “Of death” by Francis Baco

    o   “On meeting death cheerfully” bySeneca

    o   “People like that are the only people here: Canonical babblings in peed onk” (peed onk=pediatric oncology), by Lorrie Moore

    o   “Witness” by Richard Selzer

  • Short stories from other books

    o   “Fortitude” by Kurt Vonnegut

    o   “Harrison Bergeron” (story of the handicapper general) by Kurt Vonnegut

    o   “Masks” by Damon Knight

  • Other websites

    o   Human Genome Project   (U.S. Dept of Energy)

    o   Learn.Genetics--Genetic Science Learning Center, University of Utah

    o   Bioethics Resources on the Web, National Institutes of Health

    o   Human Fertilisation & Embryology Authority, UK

    o    Hybrids and chimeras, April 2007

    o    Choices & Boundaries, 2006 (brings us "where do we draw the line" issues)

    o   Institute for Public Health Genetics (a major graduate program), University of Washington, Seattle

    o   President’s Council on Bioethics

    o   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 Human Development
    University of Delaware
    Newark, DE 19716
    (302) 831-1650 (phone)
    (302) 831-6058 (fax)

     

    This page was last modified on 04/30/12.