Genetic Information Non-Discrimination Act

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Article summary (how summaries work)
The Genetic Information Non-Discrimination Act (GINA) makes it illegal for health insurers to deny coverage or charge a higher rate or premium to an otherwise healthy individual found to have a potential genetic condition or genetic predisposition towards a disease or disorder. GINA also makes it illegal for employers to use an employee's genetic information when making hiring, firing, placement, or promotion decisions. The House and Senate passed the bill, sponsored by Rep. Louise Slaughter (D-N.Y.), during the 110th Congress.


Contents

Passage in the 110th Congress

Bill summary

Specifically, the bill would:

  • Prohibit access to individual genetic information by insurance companies making enrollment decisions and employers making hiring decisions.[1]
  • 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. [1]
  • Prohibit insurance companies from requesting that applicants be genetically tested.[1]
  • Prohibit employers from using genetic information to refuse employment and from collecting such data,[1] with fines as high as $300,000.[2]

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.[1]

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.[1]

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.[3]

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.[4]

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.[5]

After passing out of the relevant committees in March, the House passed the bill (H.R.493) by 420-3 on April 24, 2007.[6]


Same for all scorecards:

Scored vote

Scorecard: American Civil Liberties Union 2007 House Scorecard

Org. position: Aye

Description:

"On April 25, 2007, the House passed the Genetic Information Non-Discrimination Act of 2007 (GINA) (H.R. 493) by a vote of 420-3. The ACLU supported this legislation as one of the first civil rights bills of the 21st century and a critical step towards securing civil liberties in the emerging field of medical technology. The legislation will provide a national framework to direct companies and states on how to protect information acquired by genetic tests and to guard against genetic discrimination. It also regulates the appropriate use of such information so employers and health insurers do not misuse it in discriminatory ways."

(Original scorecard available at: http://action.aclu.org/site/VoteCenter?page=voteList)

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.[7] 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."[8]

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.[9]


Same for all scorecards:

Scored vote

Scorecard: American Civil Liberties Union 2007 Senate Scorecard

Org. position: Aye

Description:

"On April 24, 2008, the Senate passed the Genetic Information Non-Discrimination Act of 2007 (GINA) (H.R. 493) by a vote of 95-0. The ACLU supported this legislation as one of the first civil rights bills of the 21st century and a critical step towards securing civil liberties in the emerging field of medical technology. The legislation will provide a national framework to direct companies and states on how to protect information acquired by genetic tests and to guard against genetic discrimination. It also regulates the appropriate use of such information so employers and health insurers do not misuse it in discriminatory ways."

(Original scorecard available at: http://action.aclu.org/site/VoteCenter?page=voteList)

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.[2]


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.[2]

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

October 14, 2003
Passed, 95-0, view details
Dem: 43-0 in favor, GOP: 51-0 in favor, Ind: 1-0

109th Congress

February 17, 2005
Passed, 98-0, view details
Dem: 43-0 in favor, GOP: 54-0 in favor, Ind: 1-0 in favor

Articles and resources

See also

References

  1. 1.0 1.1 1.2 1.3 1.4 1.5 Robert McElroy, "Managing America: Health," TheWeekInCongress, April 27, 2007.
  2. 2.0 2.1 2.2 Amy Harmon, "Congress Passes Bill to Bar Bias Based on Genes," New York Times, May 2, 2008.
  3. Robert McElroy, "Managing America: Health," TheWeekInCongress, April 27, 2007.
  4. "HELP Subcommittee Hearing: 'Protecting Workers from Genetic Discrimination'," Committee on Education and Labor. January 30, 2007
  5. [1]
  6. Robert McElroy, "Managing America: Health," TheWeekInCongress, April 27, 2007.
  7. Ted Kennedy. "Statement of Senator Edward M. Kennedy on Genetic Information Nondiscrimination Act," U.S. Committee on Health, Education, Labor and Pensions. January 31, 2007.
  8. Kristen A. Lee. "Senate Panel Passes Measure to Ban Genetic Discrimination," Congress Daily. February 1, 2007.
  9. Info page on H.R.494, OpenCongress.org.

External resources

External articles

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