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Who Gets To Know? Genetics & Privacy
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Viewer's Guide

Pre- and Post-Viewing Questions

This viewer's guide divides the program into three segments, each with a specific theme. The questions are organized accordingly. To find a particular segment on the videotape, begin by setting the counter to 00:00 when you first see the Fred Friendly logo. Then, fast forward to the section in which you are interested.

Theme of Segment 1: Genetic test results can have unintended consequences.

Questions to consider before watching Segment 1 (from 00:00 to 16:10 on the videotape counter):

  • Suppose you're considering being tested for BRCA-1, a gene associated with some forms of hereditary breast cancer. Your mother and aunt, breast cancer survivors, urge you to have the test so that you can take appropriate health measures. But a colleague points out that a positive result—and the possibility of a disabling illness—could jeopardize your chances for promotion if your employer learns of it. What should you do?


  • Most cancers are caused by genetic mutations acquired during a person's lifetime. Sometimes these mutations can be caused by environmental factors and other times they are inherited. In the case of inherited mutations, researchers can look for a genetic link when two first-degree relatives like a mother, father, sister, or brother have the same disease. If this were the case in your family, what factors would influence your decision whether to be tested for the relevant genetic marker? While you watch, think about how you might feel if you were in Artie's situation. How might genetic information affect your future outlook or behavior?
After watching Segment 1:
  • Dr. Nancy Wexler, role-playing a genetic counselor, suggests the possibility that Artie could pay out-of-pocket for his genetic testing so that the results won't be made available to his insurance company. The test is expensive. How does Artie balance the cost against the risk to his privacy?


  • Genetic information has implications not only for the individual being tested, but also for his or her entire family. Artie's sister, played by Congresswoman Slaughter, says, "I'm afraid to know... [because] I'm scared of what's going to happen to that information." Should he tell her anyway? Who else might think they have a right to know?

Theme of Segment 2: It's not clear who owns genetic information, nor how it should be safeguarded.

Questions to consider before watching Segment 2 (from 16:10 to 38:58 on the videotape counter):
  • Your genome reveals an encyclopedia of information about you and your extended family. With it comes the possibility of misuse by insurers and employers. If you decided to have a genetic test, how could you control access to the results? What kind of safeguards do you envision?


  • In this part of the program, Justice Breyer says, "I don't see the difference between the genetic test for the child and all the other tests that they perform." As you watch, think about what position you might take on this issue.
After watching Segment 2:
  • Artie is surprised when his physician, Dr. Denise Rodgers, agrees that he has a right to privacy, but tells him, "I can't destroy your records." In her position, what do you think you would do? What do you think of Artie's opinion that he has a right to deal with the records as he sees fit? Who should control your records?


  • In addition to obtaining the medical and educational records of the child he is planning to adopt, Artie wants the child to undergo genetic screening. What do you think of this request? Would you feel differently about a test that screened only for specific serious diseases? What about a test conducted after the adoption?


  • As a candidate for an important government position, should Stephen Breyer undergo genetic screening? Does the public have the need, or the right, to know the genetic profiles of elected officials?


  • Learning of the possible nomination of Artie's brother, Stephen Breyer, to the Supreme Court, journalist Cynthia McFadden queries him about the family's medical problems. Should Cynthia have swiped the judge's napkin? Should she have it tested? Should she report her findings?

Theme of Segment 3: Parents, insurers, employers, courts, and many other parties may seek access to genetic information—sometimes for conflicting purposes.

Questions to consider before watching Segment 3 (from 38:58 on the videotape counter to the end):

  • Imagine if an insurance company chose to deny or limit coverage of a genetic condition. In turn, business owners become concerned about keeping premiums low. Suppose an employer offers you the job of your dreams on condition that you undergo genetic screening. Does she have the right to ask? Think about what you would do in this situation.


  • In this segment, a business owner whose company is expanding wants to test prospective employees for conditions that could reduce their term of productive employment, such as heart disease and certain cancers. Is that his prerogative?


  • Also in this segment, when a couple with two children get divorced, the wife's attorney plans to use the results of her husband's genetic test, indicating that he has Huntington's disease, in her custody suit. What do you think of that decision?
After watching Segment 3:
  • Equal Employment Opportunity Commissioner Paul Miller says, "I can study hard and get better grades. There's nothing I can do about that [a genetic test]. You are going to define me in a way that I get boxed in." Do you agree with Miller? Is there a difference between genetic information and the other kinds of personal and medical information a job candidate might be willing to provide a prospective employer?


  • Some say that genetic information falls under the same privacy laws as other medical information. In his employer role, Artie is one of them; he feels he has the right to any information that will help him assess an employee's future performance. On the other hand, Artie's partner, Attorney Harold Coxson, is dubious; he feels that genetic information is "too remote, too speculative." After all, the person may not develop the condition, or a cure may be found. Is the potential for discrimination greater when it comes to genetic information because of its purely predictive nature? How does it differ from high blood pressure and high cholesterol as predictors?


  • Judge Durham points out that, "when people bring a piece of litigation into the courts for resolution, they are choosing a public forum for the resolution of those disputes." What factors decide whether genetic information is relevant in a court of law?


  • Does the appropriateness of a genetic test depend on who would have access to the results?

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