Background on H.R. 1227:
The Genetic Information Non-Discrimination Act

The Genetic Information Non-Discrimination Act protects individuals from discrimination in health insurance policies and employment on the basis of their genetic information. This protection will reduce concerns about the potential for discrimination in hiring, and in the availability and cost of health insurance. The legislation also will encourage individuals to take advantage of genetic testing, new therapies and to 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 to $500,000 and up to 10 years in prison.

Employment

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 Information

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.

Definitions

“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” are defined as an analysis of human DNA, RNA, chromosomes, proteins or metabolites that detects genotypes, mutations or chromosomal changes.