Online Education Kit: Genetic Testing: Protecting Health or Denying Rights?

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Genetic Testing: Protecting Health or Denying Rights?

Vignette:

Kyle is a gifted athlete who led his college football team to the national championship and achieved his life's ambition of playing professional football. When he went pro, he signed a long term contract worth $50 million over eight years. Throughout his first three seasons, his performance has not lived up to his coach's high expectations. Because of this, there has been talk that the team would like to trade him.

During a recent routine physical, team doctors offer the option for all players, including Kyle, to take a series of genetic tests that would determine whether any players had a likelihood of developing heart disease. The doctors tell the players that the tests could inform them of potential increased risks for heart disease, but will not actually tell them if they have the disease. In other words, if a player receives a positive result, it does not necessarily mean he will become sick. Though Kyle's team is not requiring any player to take the tests, they tell players that if a test gives a positive result, they won't be able to play football because football players are put through strenuous amounts of exercise that may put too much stress on their hearts. The team argues that learning such information could be extremely valuable and potentially life–saving to its players.

After hearing all of the information and weighing the potential consequences, Kyle chooses to take the genetic tests. Based on the results of the tests, doctors learn that Kyle has a 25 percent chance of developing a specific heart disease that causes the heart muscle to thicken and work less efficiently. Because Kyle's football team does not want to take any chances, the front office decides to release Kyle from his $50 million contract on medical grounds, even though Kyle may not ever develop any sort of heart disease.

Discussion Questions:

  1. Advances in technology are making it easier and less expensive to screen for genetic contributions to diseases. Should employers or insurance companies be allowed to require these types of genetic testing for diseases that might be related to the possible future health (or illnesses) of their employees, even when a person is not sick and/or has no family history of genetic disease?

  2. What are the positive and negative implications for employers and employees if employers (not just this football team) required these types of tests?

  3. Employers want to hire healthy people. Besides protecting employees from harm on the job, if they fail to provide a safe work environment, employers may be held legally responsible for any harm that comes to their employees. If work related activities (exercise in Kyle's case) involve a higher risk for disease or injury, should employers have the right to require genetic testing to exclude specific people from working in that environment? Why or why not?

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Last Updated: April 2, 2012