Promises and Perils
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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



Resource Book Index: Promises and Perils


Winding Your Way Through DNA Resource Book Index


Winding Your Way Through DNA Lectures Index


About Biotech Index


 
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