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Data Bank: Consumer Genetic Testing and Cases of Genetic Discrimination

Rick Weiss reports today on the Equal Opportunity Commission’s proposed rule making for the Genetic Information Non-Discrimination Act. When the rule is final, it has the forward-looking potential to prevent workplace discrimination based on personal genetic data.

Documented instances of employer discrimination based on DNA are at the moment rare (details on two cases below), but access to affordable direct-to-consumer genetic testing services not only increases the amount and availability of genetic information, but it increases the possibility that third parties could see it and use it to make discriminatory decisions. GeneTests, a group that provides information on genetic testing, charts the rise in labs offering an expanded array of tests for more and more diseases:
lab growth and tests available
(Source:, © University of Washington, Seattle)

In their report, “Genetic Non-Discrimination,” Michael Rugnetta, Jonathan Russell, and Jonathan Moreno outline the details of two lawsuits filed on behalf of workers who were discriminated against based on their DNA:

Lawrence Berkeley Laboratory (1999)

  • Accused of conducting pre-employment screening for sensitive medical information, testing for genetic traits such as sickle cell trait, and for non-genetic factors such as syphilis and pregnancy
  • Charges filed under: Title VII of the Civil Rights Act of 1964, and right to privacy as guaranteed by the U.S. and California Constitutions (also the Americans with Disabilities Act, but this was not affirmed by the courts)
  • Company argument: sought to have case dismissed in summary judgment without a trial, claiming that the statute of limitations had run out
  • Ruling: The U.S. Court of Appeals for the Ninth Circuit sided with the workers

Burlington Northern Santa Fe Railway Corporation (2002)

  • Employees charged that those who had filed for workers compensation for carpel tunnel syndrome—a painful hand and wrist condition caused by repetitive motion—were tested for a genetic marker
    – Tests performed without their knowledge
    – Marker dubiously associated with carpel tunnel syndrome
  • Charges filed under: Americans with Disabilities Act of 1990 by the Equal Employment Opportunity Commission
  • Company argument: testing necessary to determine cause of injury for 36 employees who claimed to have job-related carpel tunnel syndrome
    – 20 employees were tested before program voluntarily suspended
  • Settlement: Company agreed to halt testing and pay $2.2 million

As Weiss points out, this EEOC rule will implement a historic piece of civil rights legislation, but the rules for protections from insurance discrimination, handled under a separate GINA Title, are another complex matter that the relevant agencies have yet to sort through. They should not delay. The amount of personal genetic information available will continue increasing. It should help improve health care and not prevent people from getting access to it.

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