POLS 632 –
Biotechnology and Political Structures
Fall 2008
Andrea
Bonnicksen, Zulauf Hall 401, 753-7059, albcorn@niu.edu
Office
hours: T
Knowledge
gained from the human genome project is likely to expand considerably in the 21st
century in ways that affect daily life. Among other things, pharmacogenomics
will allow the targeting of drug therapies to the genotypes of individual
patients; genetic testing will enable individuals to learn about their predispositions
to a growing array of diseases and conditions; and DNA data banks will present
new uses for criminal prosecutions. Although genetic information holds promise,
it has also generated spirited debate about its ethical and policy dimensions.
This seminar will focus on selected policy issues raised by medical genetics.
It aims to convey to its members a substantive understanding of a particular policy
area, look critically at the extent to which genetic information is different
from other medical information for policy purposes, and examine to what extent
genetic advances warrant new oversight and legislation. Members of the seminar
will have the opportunity to explore particular areas of interest by writing a
paper related to genetics and public policy.
James
D. Watson and Andrew Berry, DNA: Secret
of Life.
2003.
Matt
Ridley, Nature Via Nurture: Genes,
Experience, and What Makes Us Human. New
John
Harris, Enhancing Evolution: The Ethical
Case for Making Better People.
University Press, 2007.
Mark
L. Winston, Travels in the Genetically
Modified Zone.
University Press, 2003.
Most
of the readings below are available on electronic reserves (ER). Information on
gaining access to electronic
reserves will be given on August 28 in class.
I. HISTORY AND OVERVIEW (AUGUST 28, SEPTEMBER 4)
Genetics
in art and culture
Suzanne
Anker and Dorothy Nelkin, Molecular Gaze:
Art in the Genetic Age. Cold
Optional
browse:
- Genomic
- http://www.vanderbilt.edu/AnS/english/Clayton/273-F01.htm
- Henry Fountain, Song of Myself:
DNA Ditties.
Times
Genetic
literacy
Bruce
Jennings, “Genetic Literacy and Citizenship: Possibilities for Deliberative
Democratic Policymaking in Science
and Medicine.” The Good Society
13(1):38-
44 (2004). ER
DNA
discoveries
James
Watson and Andrew Berry, DNA: Secret of
Life, chapters 1-5
Robert
Cook-Deegan, The Gene Wars: Science,
Politics, and the Human Genome. New
Human
Genome Project
James
Watson and Andrew Berry, DNA: Secret of
Life, chapters 7-8, 13
National
Human Genome Research Institute. “Understanding the Human Genome
Project.” http://www.genome.gov/25019879
“About
ELSI.” www.genome.gov/10001754
Materials” (click on Beyond the
Human Genome Project). www.ornl.gov/sci/techresources/Human_Genome/graphics/slides/talks.shtml
R.C.
Lewontin, “The Dream of the Human Genome.”
28, 1992. ER
Eugenics
Diane
Paul, Controlling Human Heredity: 1865 to
the Present. Humanities Press, 1995,
pp. 1-21. ER
Buck v.
See,
e.g., “Eugenics Archive.” Type in www.eugenicsarchive.org/eugenics
II. GENETIC
EXCEPTIONALISM (SEPTEMBER 11)
Differing
perspectives
George
J. Annas, “Genetic Privacy: There Ought to be a Law.”
Politics 4(1):9-15
(1999). ER
Douglas
H. Ginsburg, “Genetics and Privacy.”
23 (1999). ER
Mark
A. Rothstein, “Why Treating Genetic Information Separately is a Bad Idea.”
Review of Law & Politics 4(1):33-37
(1999). ER
Michael
J. Green and Jeffrey R. Botkin, “’Genetic Exceptionalism’ in Medicine:
Clarifying the Differences between
Genetic and Nongenetic Tests.” Annals of Internal Medicine 138(7):571-75
(2003). ER
Mark
A. Rothstein, “Genetic Exceptionalism and Legislative Pragmatism.”
Center Report 35(4):27-33
(2005). ER
Matt
Ridley, Nature Via Nurture: Genes,
Experience, and What Makes Us Human. New
Genetic
Information Nondiscrimination Act (GINA)
Genetic
Information Nondiscrimination Act of 2008 (H.R. 493). ER
Kathy
L. Hudson, et al., “Keeping Pace with the Times – The Genetic Information
Nondiscrimination Act of 2008.”
Russell
Korobkin and Rahul Rajkumar, “The Genetic Information Nondiscrimination Act
–
A Half-Step toward Risk Sharing.”
–
359(4):335-7 (
III. GENETIC TESTING AND SCREENING (SEPTEMBER 18, 25)
Nature
of gene-linked disease
Yudhijit
Bhattacharjee, “Friendly Faces and Unusual Minds.” Science 310:802-4
(
www.ornl.gov/sci/techresources/Human_Genome/medicine/assist.shtml
www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome
www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/cf.shtml
James
Watson and Andrew Berry, DNA: Secret of
Life, chapters 11-12
Gene
testing and development of genetic tests
www.ornl.gov/sci/techresources/Human_Genome/medicine/genetest.shtml
Optional.
“Pharmacogenetics: Is This Drug for You?” Video panel discussion from www.dnapolicy.org/news.past.php?action=detail&past_event_id=36
Karen
Peterson-Iyer, “Pharmacogenomics, Ethics, and Public Policy.” Kennedy Institute
of Ethics Journal 18(1):35-56
(March 2008). ER
“ASHG
Statement on Direct-to-Consumer Genetic Testing in the
American
Journal of Human Genetics 81:635-37 (September 2007). ER
Francis
S. Collins, “What we do and don’t know about ‘race’, ‘ethnicity’, genetics and
health at the dawn of the genome
era.” Nature Genetics 36:S13-S15
(2004). ER
Jennifer
Couzin, “Probing the Roots of Race and Cancer.” Science 315:592-94 (February
2, 2007). ER
Lundy
Braun, “Race, Ethnicity, and Health: Can Genetics Explain Disparities?”
Perspectives
in Biology and Medicine 45(2):159-74 (Spring 2002). ER
Genetic
privacy
www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml
Optional.
“Genes in Uniform: Don’t Test, Don’t Tell.”Video panel discussion from
www.dnapolicy.org/news.past.php?action=detail&past_event_id=25
Roberta
B. Meyer, “The Insurer Perspective.” In Mark A. Rothstein, ed., Genetics and
Life Insurance.
Mark
A. Rothstein, “Policy Recommendations.” Mark A. Rothstein, ed., Genetics and
Life Insurance.
Dena
S. Davis, “Genetic Research and Communal Narratives,”
34(4):40-49 (July-August 2004). ER
Genetic
screening of newborn infants
George
Cunningham, “The Science and Politics of Screening Newborns.”
Journal of Medicine
346(14):1084-85 (2002). ER
Browse.
Save Babies Through Screening Foundation, “Diseases Screened for in
http://www.savebabies.org/states/illinois.php
Marvin
Natowicz, “Newborn Screening – Setting Evidence-Based Policy for
Protection.”
2005). ER
Mary
Ann Baily and Thomas H. Murray, “Ethics, Evidence, and Cost in Newborn
Screening.”
Virginia
A. Moyer, et al., “Expanding Newborn Screening: Process, Policy, and
Priorities.”
IV. PREIMPLANTATION GENETIC TESTING (OCTOBER 2)
Attitudes
and practices in the
Susannah
Baruch, et al., “Genetic Testing of Embryos: Practices and Perspectives of US
in Vitro Fertilization Clinics.” Fertility & Sterility 89(5):1053-58
(May 2008). ER
Henry
T. Greely, “An Introduction – and Some Conclusions.” Fertility & Sterility
85(6):1631-32 (June 2006). ER
Rebecca
Dresser, “Preimplantation Genetic Diagnosis as Medical Innovation: Reflections
from The President’s Council on
Bioethics.” Fertility & Sterility
85(6):1633-37
(June 2006). ER
Kathy
L. Hudson, “Preimplantation Genetic Diagnosis: Public Policy and Public
Attitudes. Fertility and Sterility 85(6):1638-45 (June 2006). ER
Optional.
“Custom Kids? Genetic Testing of Embryos” (see Laurie Goldberg Strongin).
Video panel discussion from
www.dnapolicy.org/news.past.php?action=detail&past_event_id=20
Practices
in
Erin
L. Nelson, “Comparative Perspectives: Regulating Preimplantation Genetic
Diagnosis in
52 (June 2006). ER
PAPER PROPOSALS
DUE (OCTOBER 9)
MIDTERM EXAM
DISTRIBUTED (OCTOBER 9)
V. GENE THERAPY AND ENHANCEMENT (OCTOBER 9, 16)
Somatic
cell gene therapy
Amanda
Griscom, “Take these Genes and Call Me in the Morning.”
http://www.wired.com/wired/archive/10.09/gvaccines_pr.html
ER
Browse
www.genome.gov (National Genome Research
Institute)
Germ-line
gene therapy
Nelson
A. Wivel and LeRoy Walters, “Germ-Line Gene Modification and Disease
Prevention: Some Medical and Ethical
Perspectives.” Science 262:533-38
(
Julie
Gage Palmer and Robert Cook-Deegan, “National Policies to Oversee Inheritable
Genetic Modifications Research.” In
Audrey R. Chapman and Mark S. Frankel,
eds. Designing Our Descendants.
2003, pp. 275-95. ER
Genes
and enhancement
John
Harris, Enhancing Evolution, entire
book
Optional.
“Gene Doping: Human Genetic Technologies and the Future of Sports.”
Video panel discussion from
www.dnapolicy.org/news.past.php?action=detail&past_event_id=17
Optional.
President’s Council on Bioethics, Beyond Therapy: Biotechnology and the
Pursuit of Happiness. ReganBooks,
2003, chapter 2. Available at
MIDTERM EXAM
DUE (OCTOBER 16)
VI. FORENSICS AND CRIMINAL DATA BANKS (OCTOBER 23)
James
Watson and Andrew Berry, DNA: Secret of
Life, chapter 10
Optional.
Greggory LaBerge, Denver Police Department Crime Laboratory. PowerPoint
presentation from www.dnapolicy.org/news.past.php?action=detail&past_event_id=42
Margaret
A. Berger, “Lessons from DNA: Restriking the Balance Between Finality and
Justice.” In David Lazer, ed., DNA and the Criminal Justice System: The
Technology of Justice. MIT Press,
2004, pp. 109-31. ER
Barry
Steinhardt, :Privacy and Forensic DNA Data Banks.” In David Lazer, ed., DNA
and the Criminal Justice System: The
Technology of Justice. MIT Press, 2004, pp.
173-96. ER
Shiela
Jasanoff, “DNA’s Identity Crisis.” In David Lazer, ed., DNA and the Criminal
Justice System: The Technology of
Justice.
MIT Press, 2004, pp. 337-55. ER
www.ornl.gov/sci/techresources/Human_Genome/elsi/forensics.shtml
VII. BEHAVIOR AND GENETICS (OCTOBER 30, NOVEMBER
6)
Matt
Ridley, Nature Via Nurture. Remainder
of book
John
R. Alford, Carolyn L. Funk, and John R. Hibbing, “Are Political Orientations
Genetically Transmitted?” American Political Science Review
99(2):153-67
(2005). ER
Jaime
E. Settle, et al., “Friendships Moderate an Association Between a Dopamine Gene
Variant and Political Ideology.” ER
http://jhfowler.ucsd.edu/friends_drd4_and_political_ideology.pdf
James
H. Fowler and Christopher T. Dawes, “Two Genes Predict Voter Turnout.”
Journal
of Politics 70(3):579-94 (July 2008).
ER
http://jhfowler.ucsd.edu/two_genes_predict_voter_turnout.pdf
Optional.
John R. Alford, Carolyn L. Funk, and John R. Hibbing, “Beyond Liberals and
Conservatives to Political Genotypes
and Phenotypes.” Perspectives on Politics
6(2):321-28 (June 2008).
VIII. ANIMAL AND PLANT BIOTECHNOLOGY (NOVEMBER 6, 13)
Animal
organisms
HHMI.
“A Brief Guide to Model Organisms.” www.hhmi.org/genesweshare/e300.html
NHGRI.
“Background on Mouse as a Model Organism.”
http://www.genome.gov/10005834
Agricultural
biotechnology
Mark
Winston, Travels in the Genetically
Modified Zone, entire book
Lee
Ann Jackson and Michele T. Villinski, “Reaping What We Sow: Emerging Issues
and Policy Implications of
Agricultural Biotechnology.” Review of
Agricultural
Economics
24(1):3-14 (Spring-Summer 2002). ER
www.ornl.gov/sci/techresources/Human_Genome/elsi/gmfood.shtml
www.who.int/foodsafety/publications/biotech/20questions/en
PAPERS
PRESENTED (NOVEMBER 20, DECEMBER 4)
FINAL EXAM
DISTRIBUTED (DECEMBER 4)
FINAL EXAM DUE
(DECEMBER 11)
Some
websites:
http://www.genome.gov/PolicyEthics
http://bioethics.georgetown.edu/nirehg
http://gslc.genetics.utah.edu/units/basics/tour/
www.lawgenecentre.org/update/newsletter
www.newdrugs.com/stemcells (stem
cell blog)
www.nuffieldbioethics.org (
http://cbac-cccb.ca
(Canadian Biotechnology Advisory Committee)
www.ncsl.org/programs/health/genetics/charts.htm
(states’ genetic laws)
Grades
will be based upon 2 take-home exams, a research paper, and participation, for
a total of 220 points. Grades will be determined on a percentage scale as
follows: 180 – 200 = A; 160 – 179 = B; 140 – 159 = C; 120 – 139 = D
ITEM DATE
DUE POINTS
Research
proposal October 9
-
Midterm exam
Research paper
Final exam
Participation - 20 points
The
research paper will give you the opportunity to explore in detail a subject in
genetics policy that is of particular interest to you. The paper should be 15-18 double-spaced,
typed pages with one-inch margins and regular spacing between paragraphs. It
will be due in written form on October 16. Class presentations will be November
20 and December 4. More information about the papers will be presented in
class.
PAPER PROPOSALS
Paper
proposals are worth l0 points. The proposal is important because it is a road
map for your research. I recommend working on it carefully; a well-formulated
proposal will make the research and writing easier. Proposals often have the
following problems: too general, too
broad, no clear research question, conclusions already reached, sources not
found or read, sources inadequately cited, signs of having been written with
great haste. To avoid these problems, please write a proposal of ~ 2 pages that
includes the following:
PAPERS
The paper should relate to a specific issue in
genetics (biotechnology) and policy. Preferably this issue will be based in the
Here are sample general topic areas:
Regulation
of gene tests
Overload
of DNA data banks for criminal procedures
Research
incentives for targeted gene therapy studies
Oversight
of pharmacogenomic clinical trials
Variation
in newborn screening laws across states
You may also want to look at the policy process
– e.g., some aspect of the politics of GINA, how issues in genetics are framed
for policy purposes, or how the process of agenda setting has unfolded for a
particular issue in genetics and policy. It might help to look at books that
describe different models for studying public policy, such as:
John W. Kingdon, Agendas, Alternatives, and Public Policies.
Company
1984 (a second edition is also available).
Paul A. Sabatier, Theories of the Policy Process. Westview Press, 2007.
Thomas A. Birkland, An Introduction to the Policy Process. M.E. Sharpe Inc., 2001.
EXAMS
The
midterm and final exams will be distributed one week before their due dates. It
is expected that you will integrate (with APA-style citation) at least 3
different class readings into each essay. To prepare, you are encouraged to
take notes on the readings.
PARTICIPATION
Participation
will be based on attendance (with special attention to the days the papers are
presented) and a demonstration that you have read the readings and have
synthesized and analyzed them. When you
have been asked to present an article in class, please do the following:
1.
Briefly summarize the article or chapter. What is the author’s purpose in
writing it? What is the author’s main theme? What is the research question?
2.
Next, engage us with the article or chapter. What is unique or important about
the article? Does it provoke curiosity? Is it well argued? How does this
article further our knowledge about the topic?
Keep
in mind that everyone will have read the article so we don’t need all the
details. Prepare separate notes and do not read directly from the article.