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Genetic Information Nondiscrimination Insurance Act (H.R. 1227 / S. 306) – Seek Cosponsors and House Action on Bill

The United States Congress is currently considering legislation that would prohibit insurers and employers from discriminating against Americans based on genetic information about themselves or their family members.

For the past six years, legislation has been introduced in Congress to address genetic information discrimination. On February 7, 2005, Senator Olympia Snowe (R-ME) re-introduced S. 306, the Genetic Information Nondiscrimination Act, which was passed by the Senate Committee on Health Education, Labor and Pensions (HELP). On February 17, 2005 S. 306 unanimously passed the Senate by a 98-0 vote.

On March 10, 2005, Representatives Judy Biggert (R-IL) and Louise Slaughter (D-NY) re-introduced the Genetic Information Nondiscrimination Act, H.R. 1227. The House bill is identical to the Senate passed version. The bill has been referred to three committees – the Committee on Education and the Workforce (primary jurisdiction), the Committee on Energy and Commerce and the Committee on Ways and Means. None of the House Committees have taken any action on the bill.

Legislative Summary

The Genetic Information Nondiscrimination Act protects individuals from discrimination in health insurance policies and employment on the basis of their genetic information. This protection aims to help reduce concerns about the potential for discrimination in hiring and in availability and costs of health insurance, and encourages individuals to take advantage of genetic testing, new technologies and therapies and participate in genetic research.

Health Insurance

This legislation amends the Employee Retirement Income Security Act of 1974 (ERISA) and the Public Health Services Act (PHSA) by prohibiting health insurance issuers from:
- Adjusting premiums on the basis of genetic information;
- Requesting or requiring an individual or a family member of an individual to undergo a genetic test; and
- Using or disclosing genetic information for purposes of underwriting or determining enrollment eligibility.

This would apply to employer-sponsored group health plans, health insurance issuers, Medigap, and state and local non-federal governmental plans as well as others.

Protection under this law applies to everyone regardless of whether a person is currently sick, disabled or currently healthy. If found in violation of this law, fines would range from $2,500 - $500,000 and up to ten years in prison depending on the severity of the violation.


The second part of the legislation protects employees from having genetic information used against them by:
- Prohibiting employers, including employment agencies and labor organizations, from “requesting or requiring” genetic testing of an individual or his family;
- Prohibiting employers from using genetic information to make hiring or promotional decisions, or when determining eligibility for training programs.

Employers are prohibited from requesting, requiring, or purchasing genetic information about an employee or family member, except for the following legitimate reasons:
- For genetic monitoring of biological effects of toxic substances in the workplace;
- If the employer provides genetic services such as through a wellness program, with the employee’s prior consent;
- For compliance with the Family and Medical Leave Act; or
- The purchase of commercially and publicly available documents or inadvertently requesting or requiring family medical history would not violate this title.

However, under each of the above exceptions a person’s genetic information still could not be used or disclosed.


Privacy protections currently established in the 1996 Health Insurance Portability and Accountability Act (HIPAA), Americans with Disabilities Act and the Civil Rights Act only touch on the issues raised by the misuse of genetic information. The Genetic Information Nondiscrimination legislation provides comprehensive and consistent protections against a person’s genetic information from employers and insurers.


Genetic Information – Is defined as information about an individual’s genetic tests, information about genetic tests of an individual’s family members, or information about the occurrence of a disease or disorder in family members and specifically exclude information about an individual’s sex or age.

Genetic Tests – The legislation defines a genetic test as an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes.

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