This
section provides
a selection of projects that your instructor may ask you to do before
class, during class, or after class on the topic of 'designer children'.
These activities may be assigned to individuals or groups of students.
Even
if these activities are not required, thinking about the issues
they raise may better prepare you for class discussion, writing
assignments, or an exam.
Please
send comments, suggestions, or ideas for additional individual or
group projects to choices@vt.edu.
Download
Complete Exercises as PDF File
Background
Activities
What
is a gene?
What
is a disease? What is illness?
The Nature/Nurture Debate
Bioethics Tutorial
What
is a gene?
This
activity is designed to provide you with background information
on the science of gene therapy and genetic enhancement.
Please
view the tutorial in real
media format, which was screened by the moderator, panelists, and
audience members in March 1999 to provide a common framework for
their discussion. (Transcript)
To download
the latest version of Real Player Software, please click here.
To download the latest version of Adobe Acrobat Reader, please click
here.
To learn even
more about genetics:
Then,
read chapter 7, "Dr. Lu's Patients Have the Right to Be Tall
(or do they?)" of Your
Genes, Your Choices: Exploring the Issues Raised by Genetic Research.
By Catherine
Baker, Your Genes,
Your Choices is an exploration of issues raised by genetic
research. It describes the Human Genome Project, the science behind
it, and the ethical, legal, and social issues that are raised
by the project. This book was written as part of the Science +
Literacy for Health project of the American Association for the
Advancement of Science (AAAS) and funded by the U.S. Department
of Energy.
Skim the other
chapters as necessary.
Then, take this
short quiz. (Follow your instructor's
directions about submitting this quiz.)
What
is a disease? What is illness?
If
you had the opportunity to select for or against certain genetic
characteristics of your future child, what would they be and why?
How do these decisions relate to who you and your parents are? Are
these genetic traits related to disease or illness? If not, what
are the advantages and disadvantages? What are your definitions
of 'disease' and 'illness'? What sources of information are you
using?
Participate
in an online discussion on this topic.
Instructors
— use the discussion board available through your course homepage
at http://www.learn.vt.edu
or contact choices@vt.edu to
reserve NetForum space.
Please
treat your classmates with the same respect that you would show
them within a classroom situation
Questions
about using NetForum?
The
Nature/Nurture Debate
Do
your genes determine who you are? Or do other, environmental factors
shape your personality, your height and weight, and the other characteristics
that make you "you"?
Why
do some people get sick, while others remain healthy? Do their genes
make them more susceptible to disease, or is it because of their
life history — choices they have made about food, exercise,
or employment?
Research
this issue, starting by exploring the websites below:
Contemporary
issues in science: do your genes drive you to drink? http://www.sciencemuseum.org.uk/on-line/genetics/index.asp
Nature
vs. Nurture Revisited — Kevin Davies http://www.pbs.org/wgbh/nova/genome/debate.html
Nature
vs. Nurture (PBS Online News Hour Video, 1998) http://www.pbs.org/newshour/bb/health/july-dec98/naturenurture_10-20.html
Boys will
be boys: nature vs. nurture (60 Minutes Video, 2000) http://sixtyminutes.ninemsn.com.au/60/stories/2000_05_07/story_158.asp
Next: Write
a mock debate on the issue in which you assume the identity of two
people and argue both for and against each point of view (that is,
nature vs. nurture). Do these two individuals come to an agreement,
or does the debate have no resolution? Cite evidence from your research
to support both points of view.
Bioethics
Tutorial
First
read:
Thinking
Ethically: A Framework for Moral Decision Making
Developed by Manuel Velasquez, Claire Andre, Thomas Shanks, S.J.,
and Michael J. Meyer, Markkula Center for Applied Ethics at Santa
Clara University http://www.scu.edu/SCU/Centers/Ethics/practicing/decision/thinking.html
This reading
describes five approaches to ethical decision-making: utilitarian;
rights-based (also called deontological); fairness or justice; common
good; or virtue. A sixth approach, dominant in the field of bioethics,
is called principlism or principle-based bioethics. Read more about
this approach in a primer developed by Thomas R. McCormick, faculty
at the University of Washington School of Medicine:
Principles
of Bioethics
http://eduserv.hscer.washington.edu/bioethics/tools/princpl.html
Next, choose
one of the scenarios below, and evaluate the situation using each
of the six ethical decision-making frameworks:
- The father
of a 30 year old man died of Huntington's Disease at age 38. Huntington's
Disease is a hereditary illness causes by a single genetic error
(see http://www.hdsa.org/
and http://www.hdac.org/hdfaq/faq.php)
that results in neurodegeneration and early death. The 30 year
old man refuses to be tested for the defect before conceiving
children with his wife; who does not know about the death of the
man's father, or the possibility that her husband also carries
the gene for Huntington's Disease. Each child of a parent with
Huntington's Disease stands a 50% chance of inheriting the disease.
Should a medical professional notify the man's wife, force the
man to be tested, or respect the man's right to privacy and autonomy?
- An infectious
agent that looks like smallpox is released in a rural town with
limited medial expertise and equipment. Federal workers want to
quarantine the area and refuse to allow medical equipment or professionals
into the town, or any town residents to leave. Medical groups
want to access the town, to save as many people as possible. People
who do not yet have smallpox want to leave. What should be done
and who should decide?
- Fluoridation
— the practice of adding fluoride to the public water supply
— has been an accepted practice in the United States for
over 50 years. Fluoride is believed by many (including the American
Dental Association) to significantly reduce tooth decay in the
population. (See http://www.ada.org/public/topics/fluoride/fluoride.html)
However, opponents point to an increase in fluoride overdose resulting
in the poisoning of young children, crippling skeletal fluorosis
in the population at large, and detrimental environmental impacts.
Opponents are particularly concerned by what they see as a lack
of individual choice. (See http://www.fluoridation.com/)
Should communities continue to fluoridate their water?
- A 25 year
old woman tests positive for a highly contagious sexually transmitted
disease for which there is currently no cure — however, early
treatment significantly decreases health risk and increases quality
of life. The woman has had over 20 sexual partners within the
last three years, including a number of persons with whom she
has practiced unsafe sex. The woman indicates that she does not
plan to contact any of her former partners, nor will she provide
her physician or the health department with their names, to urge
them to be tested. Should the woman be legally required to provide
the names of all her partners?
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Discussion
Activities
When
is genetic enhancement appropriate?
A
Presidential Commission on Germ-line Gene Therapy
Produce a PBS Educational Video
When
is genetic enhancement appropriate?
Option
I:
You and your partner choose opposing views on one of the issues
below and prepare short statements outlining your position that
you will present in front of the class and then lead a 5-10 minute
discussion.
Option
II:
On your own, choose one of the issues below and prepare short statements
outlining two opposing views. Be prepared to participate in class
discussion.
- Deaf parents
who wish to have a deaf child for cultural reasons.
- A junior
high school basketball player who wished to genetically alter
herself to continue her height growth through college in order
to improve her draft opportunities post-college.
- A physician
who recommends germ-line genetic enhancement to raise the IQ of
a child with two mentally disabled parents.
- Black parents
who are dark-skinned who wish to have a lighter-skinned child
because of continued prejudice against dark-skinned people inside
and outside the black community.
- A woman who
is told the fetus she is carrying will have a number of physical
disabilities that will not be successfully treated. The physician
reminds her that she can choose not to carry the pregnancy to
term — but she argues for the genetic enhancement of intellectual
abilities instead.
- The US military
begins to pressure the President and Congress to pass legislation
requiring all children to be genetically altered to be able to
tolerate a greater range of temperature and exposure to certain
types of chemical and biological warfare.
- Nationally,
a campaign is launched to eliminate the sickle cell trait in the
US by the year 2100 through germ-line genetic alteration.
- Gene therapy
is being developed to treat baldness in menopausal women. Should
the FDA approve it, even though off-label use will surely result?
A
Presidential Commission on Germ-line Gene Therapy
Your
group has been convened by the US President to issue a report answering
the following question: Should federal funds support experimental
germ-line gene therapy?
Your
report must address:
- The distinction
between gene therapy and genetic enhancement - if one exists;
- Arguments
from at least three ethical standpoints regarding both gene therapy
and genetic enhancement;
- The history
of genetic and reproductive policies in the United States (such
as eugenics and in vitro fertilization) and how this history does
and should effect the current situation;
- What regulations
— if any — should be put in place;
- Issues of
access and affordability;
- The goals
of germ-line gene therapy protocols and whether these 'problems'
can be addressed by alternative means;
- Other issues
are they are pertinent to the discussion.
Each member
of your group must choose one of categories below - and act from
within the boundaries of the chosen position (i.e., role-playing).
In your report,
please be sure to indicate where and why disagreements occur.
- Pediatrician
- Parent of
a mentally disabled child
- Religious
leader: please choose a faith; more than one religious leader's
participation may be necessary
- Child psychologist
- Members of
the public: a teacher, homemaker; social workers; retiree; and
so on; more than one member of the public should particiapte
- NIH administrator
- Disability
Rights advocate
- Medical researcher
whose work focuses on childhood illnesses
- Bioethicist
- FDA policymaker
- Historian
of genetic and reproductive policies
- Sociologist,
with expertise in the nature/nurture debate
- Legal scholar
- Other options
must be approved by the instructor
Produce
a PBS Educational Video
You
or your group has been hired by PBS to produce a 30-minute program
for middle school and high school students about gene therapy and
genetic enhancement. Before proceeding with production, however,
you or your group must provide PBS with a detailed sketch of the
program including:
- What topics
will be covered (in some detail)?
- What topics
will be avoided?
- What order
will topics appear?
- How much
time will be devoted to each topic?
- What will
be the structure of the program?
- What is the
justification for each of your group's decisions?
- What is the
role of experts in your production and who would you invite?
This document
you should be 4-6 pages in length, with the addition of a front-page
with the title and abstract of your program, and a 3 page annotated
bibliography composed of print and online materials related to your
proposal.
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Review
Activities
History
of Eugenics and Genetic Enhancement
Genetic Enhancement Op-Ed
Constructing Exam Questions on 'Designer Children'
Plastic Surgery & Body Projects: Enhancement?
Film as a Lens to Understand Hopes and Fears about
Enhancement
History
of Eugenics and Genetic Enhancement
Review
readings and your notes on the history of eugenics in the United
States.
Argue
for or against the following statement: "At each step of the decision-making
process regarding whether or not experiments in genetic enhancement
should proceed, the history of eugenics should play an important
and guiding role."
This
reponse should be 750 - 1000 words. Please indicate your sources.
Genetic
Enhancement Op-Ed
In these papers you should give a brief introduction explaining
the controversy over genetic enhancement, identify the key issues,
and offer your own position on what ought (or ought not) be done,
and then explain why.
To make the most convincing case, it is necessary not only to give
the arguments in support of your own position but also to identify
what the opposing arguments are (doing this fairly, of course) and
to show why your arguments are stronger or more reasonable.
Recognizing areas of uncertainty and offering suggestions for what
new policies or laws might be useful are also appropriate.
Keep in mind that op-ed articles are written for a general audience
so you must keep your op-ed paper simple and direct. You can be
dramatic, poetic, passionate. But avoid technical language. Keep
sentences short and clear. And it helps to end your op-ed paper
with a brief, snappy paragraph that sums up your view.
Each paper should be no longer than 750 words, double-spaced with
pages numbered. You must give credit to any sources that you use
including the Internet. In the case-study paper you can do this
with footnotes. However, op-ed articles do not use footnotes. So
here, you must work the credit into the text. For example, you could
write something like: "According to Jill Hudson in her November
1999 article in Discover magazine…"
Constructing
Exam Questions on 'Designer Children'
You,
or you and your partner must develop an exam to test your classmates'
understanding of the issues involved in this module.
The
exam should be worth 50 points, and include short answer, multiple
choice, and at least one essay question, among other testing mechanisms.
Also
develop an 'answer sheet' for each question - provide information
regarding: What types of information must be included for a 'complete'
answer? How many examples should be present? How much is each question
worth? How should your essay question be weighted?
Please
be sure to include grammar and writing style as part of your grading
calculation.
Plastic
Surgery & Body Projects: Enhancement?
Research
the ongoing feminist debate about the politics of non-medical cosmetic/plastic
surgery (breast enlargements, liposuction, etc.) and other body
projects like piercings, body-building, and so forth. Are body projects
like these empowering individual women or are they, in fact, oppressing
women as a group by supporting patriarchal concepts of what it means
to be a woman? Or both?
You may wish
to begin by looking here:
Balsamo, Anne,
"On the Cutting Edge: Cosmetic Surgery and the Technical
Production of the Gendered Body", Camera Obscura 28,
1992: 206-237
Balsamo, Anne.
Technologies of the Gendered Body: Reading Cyborg Women.
Durham and London: Duke University Press, 1996
Bordo, Susan,
Unbearable Weight: Feminism, Western Culture and the Body.
Berkeley: University of California Press, 1993
Davis, Kathy.
Reshaping the Female Body: The Dilemma of Cosmetic Surgery.
New York: Routledge, 1995
Dull, Diana
and Candace West, "Accounting for cosmetic surgery: the accomplishment
of gender," Social Problems, 38 (1), 1991, pp. 54-70
Featherstone,
M., M. Hepworth and B. Turner, eds., The Body: Social Processes
and Cultural Theory. London: Sage, 1991
Gilman, Sander
L. Making the Body Beautiful: A Cultural History of Aesthetic
Surgery. University of California Press, June 1999
Hausman, Bernice.
"Plastic Ideologies and Plastic Transformations", in
Changing Sex: Transsexualism, Technology, and the Idea of Gender.
Durham, NC: Duke University Press, 1995, pp. 49-71
Jacobus, Mary,
Evelyn Fox Keller, and Sally Shuttleworth, eds. Body/Politics:
Women and the Discourses of Science. New York and London:
Routledge, 1990
Morgan, Kathryn
Pauly, "Women and the Knife: Cosmetic Surgery and the Colonization
of Women's Bodies," Hypatia 6, 1991: 25-53
Wolf, Naomi,
The Beauty Myth. London: Vintage, 1991
Next, compare
cosmetic surgery and the possibility of genetic enhancement. How
have you and society more broadly reacted to these controversial
practices?
(Note: exercise
adapted from http://www.yorku.ca/caitlin/wstudies/oct5-circumcision.htm)
- Why does
one practice — genetic enhancement — get a lot of attention
in the media and in public debates, yet cosmetic surgery receives
relatively little attention?
- Why is one
practice discussed in moralistic terms and not the other?
- To what extent
is our response to each practice influenced by the particular
social context in which we live? (i.e., the values of our families,
our community, and our cultures; the mechanism of decision-making
we use) Is this different reaction directly linked to our social
context or are there other issues involved?
- Where should
our attention be — on future policies or current day practices?
Film
as a Lens to Understand Hopes and Fears about Enhancement
View
the film Gattaca (Sony
Pictures, 1997).
Compare
the issues the film raises about genetic enhancement to those raised
in class and in your readings.
In
what way does the film highlight concerns about genetic enhancement?
In what way is the film useful or not useful as part of the discussion?
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