Video Guide
Video Objectives
- To give a basic understanding of genetics
and genetic testing.
- To introduce the Human Genome Project.
Sidebar: Milestones in Biotechnology.
- To show the difference between inheriting a genetic disorder and inheriting
a predisposition to a disorder.
- To convey some of the ethical and societal issues that result from
the use of biotechnology. Sidebar: Making Big
Decisions: A Framework.
- To stimulate discussion about how the information generated by genetic
profiles can affect a person's life, career, and society as a whole.
About the Video
Advances in biotechnology are helping us identify more and more genetic
conditions--traits and disorders that are passed on from parent to child.
Instructions for these different genetic conditions are found in our
genes, each of which is a segment of a molecule of DNA. In the past ten
years, scientists have made amazing strides in determining which genes or
combinations of genes are responsible for certain genetic disorders, such
as cystic fibrosis, fragile X, and Huntington disease. Scientists also have
discovered genes which may predispose a person to a condition such as alcoholism
or depression. Armed with this information, medical researchers have developed
a number of genetic tests that allow people to determine if they or their
children have inherited or are carriers for a potentially harmful or fatal
disorder. Some of these tests can be performed prenatally, others can be
performed on newborns, children, or adults.
In the coming years, the number of available genetic tests will increase
dramatically due to the information gained from the Human Genome Project.
The Human Genome Project (HGP) began in 1990, led by the Department of Energy
and the National Institutes of Health.
The goal of this project is to identify the role of all 100,000 genes
stored in human DNA. At the same time, the HGP began to explore and anticipate
the ethical, legal and social implications which might arise once these
genes are identified. Such implications often are best considered through
real-life case studies like these presented in Promise & Perils of
Biotechnology: Genetic Testing.
Understanding the role of each gene will produce information that can
help people, but it also can pose personal and societal dilemmas. Some of
the many questions currently being asked include: Should genetic testing
for certain disorders be mandatory? Should genetic tests be performed if
there is currently no treatment or cure for the disorder? Who should pay
for the tests? How will the information provided by a test be used? Do employers
and insurance agencies have the right to know about the results of a genetic
test?
Promise & Perils of Biotechnology: Genetic Testing presents
a personal look at inherited diseases, their prevalence in society, and
the ethical, legal, and social implications of genetic testing. The video
follows Jennifer Jones as she is tested for Huntington disease, a disorder
that runs in her family. The symptoms of this debilitating fatal disease
most often appear when a person is in his or her 30s or 40s. Jennifer knows
that if she tests positive for the disease, there is no cure. She then risks
passing the gene on to her children, should she decide to have any.
The program also examines the lives of Lily Ann and Laura Sholer, who
already have been diagnosed as having a gene that leads to dangerously high
cholesterol, known as familial hypercholes-terolemia. Unlike Jennifer, the
Sholers have the opportunity to reduce their risk of heart attack by changing
their lifestyles. However, they still grapple with how the knowledge of
their condition will affect their ability to get certain jobs and insurance.
Promise & Perils of Biotechnology: Genetic Testing is an excellent
resource for examining complex issues in genetics because of the nature
and complexity of the human problems discussed, it demonstrates why scientific
information must be combined with other forms of knowledge and personal
values in order to come to a more complete understanding of the problem.
A framework that includes the elements in the diagram on this page can be
used in considering any big decision, such as Jennifer's.
Along with genetic testing, other examples of complex human problems
that could be addressed using this framework include the growth of the human
population, the potential for global climate change, and the question
at every grocery store check-out line, "Paper or plastic?"
Discussion Questions
Before viewing the video:
- What is genetic testing?
- Who needs genetic testing? Give some of the positive and negative reasons
for undergoing genetic testing.
- After viewing the video, review your responses. Did any of your answers
change? Explain.
After viewing the video:
In the video, Jennifer decides to be tested for Huntington disease.
- Would you have taken the test in the same circumstances? Why or why
not?
- If you took the test, and discovered that you had inherited the gene
for Huntington disease, what would you do with that information?
Lily Ann and Laura Sholer have been diagnosed as carriers for the gene
that causes dangerously high levels of cholesterol, or familial hypercholesterolemia.
- Would you have taken the test for this disorder? Why or why not?
- If you took the test, and discovered that you had inherited the gene,
what would you do with that information?
Links
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Resource Book Index: Promises and Perils
