Sarah's father died of Huntington's disease.  She has a 50% chance of having inherited the disease.  She mentioned at a staff meeting that she was the primary caretaker of her father who had Huntington's disease.  One week later, she was fired, although her previous evaluations showed outstanding performance on the job.

• Employment risk example
  
  • Burlington Northern Santa Fe Railroad story—In 2000, this company drew blood samples during a physical exam from employees who had developed carpal tunnel syndrome on the job.  The blood was sent for genetic testing, without employee knowledge or consent, in an attempt to find a gene that is in some way connected to carpal tunnel syndrome, so the employers could absolve themselves of their responsibility.  One employee refused testing and was threatened with termination.
   
• Health insurance risk example
  
  • Danny's story—Danny is 7 years old and in perfect health.  Genetic tests revealed that he has a gene predisposing him to a heart disorder.  He takes medication to lower his risk of heart attack.  His insurance company canceled his health insurance, stating that since he had the gene from birth, it was a pre-existing medical condition.
   
• Testing implications
  
  • Many surveys of physicians and patients have been conducted and revealed hundreds of cases of genetic discrimination. Examples:
    
    • In 1996 Georgetown University polled 332 families with perceived genetic risks:
      
      • 22% were refused health insurance.
      • 13% were fired from their jobs based on their risk.
    • A 1999 Yale Cancer Center survey of 296 genetic counselors, when asked how they would deal with genetic screening for themselves, reported:
      
      • 68% said they would not bill their insurance company for the cost of genetic screening for fear of discrimination.
      • 26% said they would give a false name.
      • 57% said they would seek psychological counseling to cope with the results.
   
• Legislation
  
  • President Clinton signed an executive order prohibiting the federal government from using genetic testing results in any decision to hire, fire, or promote its employees.  This bill covers 2 million federal employees.  It does not apply to the private sector.
  • In 2001, a bill sponsored in the House of Representatives (H.R. 602) by Slaughter and Morella, and in the Senate (S. 318) by Kennedy and Daschle, would protect all Americans from genetic discrimination.  In 2002, it is still in committee.
  • There are existing laws as of 2001 against genetic discrimination pertaining to:
    
    • health insurance:  42 states, plus 5 states with very minimal protection
    • employment:  21 states
    • disability insurance:  8 states
    • life insurance:  7 states
    • privacy of genetic information:  23 states

1.  Would Sarah encourage Kathy to get the test?  Why or why not?
2.  What other advice would Sarah give Kathy?
3.  How might these decisions affect Kathy cognitively, psychologically, emotionally?