Genetic Information Non-Discrimination Act

Bill summary
Specifically, the bill would:


 * Prohibit access to individual genetic information by insurance companies making enrollment decisions and employers making hiring decisions.
 * Prohibit insurance companies from discriminating against an applicant for a group or individual health plan based on genetic information, the refusal to produce genetic information and for having been genetically tested in the past.
 * Prohibit insurance companies from requesting that applicants be genetically tested.
 * Prohibit employers from using genetic information to refuse employment and from collecting such data, with fines as high as $300,000.

The bill defines genetic information as that obtained from an individual’s genetic test results, as well as genetic test results of family members and the occurrence of a disease or disorder in family members. Not included would be an analysis of proteins or metabolites that do not detect genotypes, mutations or chromosomal changes and do not include analyses of proteins or metabolites directly related to a disease, disorder or pathology that could reasonably be detected by a properly trained healthcare professional.

Some occupations, however, require genetic monitoring. These jobs include working with nuclear or other hazardous materials where a negative effect could be chromosomal or genetic damage. In these cases, applicants would need to be made aware in advance of hiring that the testing is required and agree in writing to the testing.

Consideration in the House


The GINA was introduced by Rep. Louise Slaughter (D-N.Y.) early in the 110th Congress, and quickly referred to the House Committee on Education and Labor. The House had previously considered the same bill in the 108th and 109th Congresses, but never reported it out of a subcommittee.

On January 30, 2007, the Subcommittee on Health, Employment, Labor, and Pensions heard testimony on the bill. Reps. Slaughter and cosponsor Judy Biggert (R-Ill.) testified before the committee along with David Escher, a former employee of Burlington Northern Santa Fe Railroad, who had his genetic information used against him by his employer.

On April 25, 2007, Rep. Ron Paul (R-T.X.) one of the only dissenters towards this bill made a statement on the floor arguing that, "A much better way to eliminate irrational discrimination is to rely on state and local regulation." He stated also expressed his concern that the Federal government has a poor record protecting individual privacy and urged his collegues into considering that creating more Federal regulations and bureaucracies will not be effective.

After passing out of the relevant committees in March, the House passed the bill (H.R.493) by 420-3 on April 24, 2007.



Consideration in the Senate
On January 31, 2007, the Senate Committee on Health, Education, Labor, and Pensions approved the Genetic Non-Discrimination Act by a vote of 19-2. The dissenters were Sens. Tom Coburn (R-Okla) and Sen. Richard Burr (R-Ga). Coburn threatened to block the bill, which he argues, "would not prohibit discrimination against embryos that have been found to be at risk for disease through genetic testing prior to implantation," and "would have 'all sorts of unintended consequences' for issues such as claims processing, medical records and information sharing with law enforcement."

After some amending, the Senate passed the House's version of the bill (H.R.493) on April 24 by a vote of 95 - 0.



Final passage
The Senate version was passed by the House on May 1, 2008, with only Rep. Ron Paul (R-Tex.) voting against it. President George W. Bush has indicated that he would sign the bill.



Support and opposition
The U.S. Chamber of Commerce opposed the final version of the bill. It said the fines were too high and that limits on collection of medical information on patients would hinder some medical practices.

Prior versions of the GINA
The Senate previously approved the bill in the 108th and 109th Congress, only to see the House fail to pass a similar bill.

108th Congress

109th Congress

External resources

 * Genetic Discrimination in Health Insurance, an explanation from the Humane Genome Project.
 * Genetic Information Non-Discrimination Act, full bill text.
 * State-by-State Genetic Non-Discrimination Laws, courtesy of the National Conference of State Legislatures.
 * The Impact of Genetic Discrimination, an issue brief from the Genetics and Public Policy Center.

External articles

 * "White House Endorses Ban On Genetic Discrimination," CNN, January 20, 1998.
 * Jones, K.C. "President Wants To Ban Discrimination Based On Genetics," InformationWeek, January 22, 2007.
 * Slaughter, Louise. "Stamping Out a New Form of Discrimination," Daily Kos, January 30, 2007.
 * Carranza, Mandy. "Genetic tests may bring hope, inspire fear," CNN, January 31, 2007