Genetic Discrimination in Health Insurance or Employment

While most Americans are optimistic about the use of genetic information to improve health, many are concerned that genetic information may be used by insurers and employers to deny, limit or cancel their health insurance and to discriminate against them in the workplace. This concern is causing some not to participate in important biomedical research and others to refuse to be tested for genetic disorders.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) [hhs.gov] was the first step toward implementation of the policy recommendations on health insurance and provided some protection from discrimination, but gaps remain. For the last several years, the Congress has drafted legislation that could address these fears by banning genetic discrimination in health insurance and employment. On October 14, 2003, after years of negotiations, the U.S. Senate passed the Genetic Information Nondiscrimination Act of 2003 (S.1053) [thomas.loc.gov] by a vote of 95-0 after the Senate Health, Education, Labor and Pensions (HELP) Committee had passed the bill by voice vote in May 2003 with no major changes when the bill came to the floor.

Current Legislation

On November 8, 2005 Secretary of Health and Human Services Michael Leavitt expressed his support for federal genetic nondiscrimination legislation in a letter to the Secretary's Advisory Committee on Genetics, Health and Society (SACGHS). Responding to a SACGHS report, Secretary Leavitt expressed his commitment to working with Congress and relevant stakeholders to achieve the timely passage of appropriate legislation.

On March 10, 2005 a bipartisan group of over 100 members of Congress introduced the "Genetic Information Non-Discrimination Act of 2005," HR 1227 [thomas.loc.gov], which is identical to S. 306 [thomas.loc.gov] that passed the Senate by a vote of 98-0.

The bill was introduced by Representatives Judy Biggert (R-IL), Louise Slaughter (D-NY), Bob Ney (R-OH), and Anna Eshoo (D-CA) and includes a group of bipartisan cosponsors. It was referred to the Committee on Education and the Workforce, the Committee on Energy and Commerce, and the Committee on Ways and Means, "for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned."

The United States Senate unanimously passed S. 306, the Genetic Information Nondiscrimination Act of 2005 on February 17, 2005, by a vote of 98-0. This bill is virtually identical to S. 1053, which passed in the last Congress.

• NHGRI Director Francis Collins Comments Regarding the Passage of S.306 (February 2005)
  
  
• Comments by Francis Collins Regarding Genetic Nondiscrimination Legislation (April 2004)

Policy Recommendations

• Policy Recommendations for Genetic Discrmination in Insurance or Employment
• Federal Government Policy for Genetic Discrimination in Insurance or Employment

Legislation

• Search the Legislative Database for State Legislation
• Federal Legislation on Genetic Discrimination in Insurance or Emloyment

Hearings

• Congressional Hearings and Testimony on Genetic Discrimination in Health Insurance or Employment

Reports

• An Analysis from the Secretary's Advisory Committee on Genetics, Health and Society
• Genetic Discrimination in Health Insurance or Employment: Reports and Publications
• Ethical, Legal and Social Implications Research Program
  • Publication Citations: ELSI Grant Publications and Products.
  • Funded Project Abstracts: The ELSI Grant Abstracts and Activities Database

To view the PDFs on this page, you will need Adobe Reader.

Top of page

Last Reviewed: February 28, 2012