HomePolicy & EthicsGenetics and the Law The Role of the NHGRI in the Federal Legislative Process

The Role of the National Human Genome Research Institute (NHGRI) in the Federal Legislative Process

The following is a translation into Web format of a poster presentation by Tim Leshan, Jennifer Leib, Barbara Fuller, Laura Lyman Rodriguez, Karen DeLeon, Jason Beekman, Mini Nair and Alan Guttmacher, all members of the Policy and Program Analysis Branch, Office of the Director, National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH).The Policy and Programming Analysis Branch in the Office of the NHGRI director analyzes and tracks federal policy and legislation that may affect the institute's mission, and develops public policy recommendations for the director.

The Genetic Information Nondiscrimination Act of 2003 (S. 1053), was passed by the U.S. Congress on October 14, 2003 and awaits the signature of the president.

This presentation outlines the salient points of The Act, which serves as a recent and relevant example of legislation related to issues of genetics and genomics, including NHGRI's involvement in the process that may lead to its enactment. If S. 1053 is enacted, it will have a profound effect on genomic research and medicine.

• How a Bill Becomes Law
  Learn the step-by-step process.
  
  
• Cases of Genetic Discrimination
  Although there have been no genetic employment discrimination cases brought before U.S. federal or state courts, the Equal Employment Opportunity Commission has settled a lawsuit alleging this type of discrimination.
  
  
• National Institutes of Health-Department of Energy (NIH-DOE) Joint Working Group Recommendations
  An overview of recommendations for how state and federal policy makers can protect against genetic discrimination.
  
  
• Existing Federal Anti-Discrimination Laws and How They Apply to Genetics
  A summary of how the Americans with Disabilities Act, the Health Insurance Portability and Accountability Act of 1996 and the Civil Rights Act apply to genetics.
  
  
• Executive Order
  In 2000, President Clinton signed an executive order prohibiting federal departments and agencies from using genetic information in any hiring or promotion action.
  
  
• Pertinent Bills Introduced in Congress in 2003
  A brief summary of bills introduced to Congress in 2003 regarding genetic discrimination.
  
  
• Genetic Information Non-Discrimination Act of 2003 (S. 1053)
  A summary of the bill passed by the Senate in October 2003.
  
  

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Last Reviewed: April 28, 2008