The President recently signed into law the Genetic Information Nondiscrimination Act (GINA) that will protect Americans against discrimination based on their genetic information when it comes to health insurance and employment.
The bill had passed the Senate unanimously and the House by a vote of 414 to 1. The long-awaited measure, which has been debated in Congress for 13 years, will pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination. Many Americans have been reluctant to take advantage of new breakthroughs in genetic testing for fear that the results will not be used to improve their health but rather to deny them jobs or health insurance. They feared "genetic discrimination."
Early Example of Genetic Discrimination
In 2001 the U.S. Equal Employment Opportunity Commission settled the first lawsuit alleging this type of discrimination. The EEOC filed a suit against the Burlington Northern Santa Fe Railroad for secretly testing its employees for a rare genetic condition that causes carpal tunnel syndrome as one of its many symptoms. Besides testing for possible carpal tunnel genes, company-paid doctors also were instructed to screen for several other medical conditions such as diabetes and alcoholism. Burlington employees examined by company doctors were not told that they were being genetically tested.
According to the lawsuit, one employee who refused testing was threatened with possible termination. On behalf of Burlington employees, EEOC argued that the tests were unlawful under the Americans With Disabilities Act because they were not job-related, and that any condition of employment based on such tests would be cause for illegal discrimination based on disability. The lawsuit was settled favorably by the EEOC. But the Americans With Disabilities Act was limited in its protection of workers.
Timeframe for New Law
GINA sets forth specific practices that are prohibited, along with new remedies and legal claims for workers. In general, the law limits the kind of information that can be gathered, as well as prohibiting discrimination against workers based on their genetic information. The health insurance protections offered by GINA are expected to roll out in 12 months, whereas the employment protections will be fully realized in 18 months. The new law is somewhat complex, so expect to see employer training information released over the next several months.
For a fact sheet on GINA from the National Institutes of Health, see http://www.genome.gov/10002328
For more information on employment discrimination or Kimberlie Ryan, see www.lawyers.com/ryanfirm
For 9News interview of Kimberlie Ryan discussing this topic, see http://www.9news.com/life/programming/shows/mornings/article.aspx?storyid=93320&catid=229