Broad Coalition of Organizations, Lawmakers Urges Swift Passage of Genetic Discrimination Legislation
Feature Story by civilrights.org staff - 4/27/2005
After nearly unanimous Senate approval earlier this year, a bill to protect individuals from discrimination based on their genetic information awaits a vote in the House of Representatives.The Genetic Information Nondiscrimination Act of 2005 (H.R. 1227), also known as GINA, would prevent health insurers from denying coverage or altering premiums based on an individual's predisposition to a genetic condition, and prohibit employers from discriminating on the basis of predictive genetic information.
"Current federal and state laws only provide a patchwork of protections to prevent employers and insurers from denying health coverage or job opportunities on the basis of genetic information," according to a statement released by the Coalition for Genetic Fairness, an alliance of industry, voluntary health agencies, provider organizations, academia, and employer-employee interests that supports comprehensive federal legislation prohibiting genetic discrimination.
"This legislation will clarify how genetic information must be protected in both an insurance and employment setting," said the statement.
The bill's supporters argue that the absence of strong protections for genetic information has led to widespread hesitation among the general public to participate in genetic testing and research.
Many individuals worry that their genetic information could be used against them.
"Unfortunately, the ability to predict disease through genetic testing and family history opens the door for discrimination," explained the Coalition for Genetic Fairness in a recent letter to House Speaker Dennis Hastert.
Genetic researchers and industry professionals argue that qualms about the disclosure of genetic information stymie the advancement of genetic knowledge and prevent people from receiving treatment for illnesses and genetic disorders.
"It is imperative to ensure that the public can take full advantage of new medical advances that could help prevent disease before it develops," said Sharon Terry, President/CEO of the Genetic Alliance and Chair of the Coalition for Genetic Fairness.
"Genetic nondiscrimination legislation will reduce the likelihood of genetic information being misused in health insurance or employment decision-making," added Terry.
In addition to the nondiscrimination provisions, the bill would prohibit employers and insurers from requiring employees and applicants to submit to genetic testing, establish strict rules for genetic information disclosure, and outline penalties for violations.
The House version of GINA was introduced last month by Representatives Judy Biggert, R. Ill., Louise Slaughter, D. N.Y., Bob Ney, R. Ohio, and Anna Eshoo, D. Cal., and enjoys broad, bipartisan support and sponsorship.
The Senate bill (S.306) passed by a vote of 98-0 on February 14.
Previous legislation (S. 1053) enjoyed similarly widespread support when it was passed 95-0 by the Senate in 2003, but did not move in the House throughout the last Congress.
For more information about genetic discrimination and the Coalition for Genetic Fairness, visit or call 202-966-557 ext. 206.
