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Wednesday, June 29, 2011

The Genetic Information Nondiscrimination Act of 2008 (GINA)

Amanda K. Sarata
Analyst in Health Policy and Genetics

Nancy Lee Jones
Legislative Attorney

On May 21, 2008, the Genetic Information Nondiscrimination Act of 2008 (GINA), referred to by its sponsors as the first civil rights act of the 21st century, was enacted. GINA, P.L. 110-233, prohibits discrimination based on genetic information by health insurers and employers. The sequencing of the human genome and subsequent advances raise hope for genetic therapies to cure disease, but this scientific accomplishment is not without potential problems. An employer or health insurer could decide to take adverse action based on a genetic predisposition to disease, and situations have arisen where discriminatory action based on genetic information did occur. In addition, there is evidence that the fear of genetic discrimination has an adverse effect on those seeking genetic testing, as well as on participation in genetic research. GINA was enacted to remedy this situation.

GINA is divided into two main parts: Title I, which prohibits discrimination based on genetic information by health insurers; and Title II, which prohibits discrimination in employment based on genetic information. Title I of GINA amends the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act (PHSA), and the Internal Revenue Code (IRC), through the Health Insurance Portability and Accountability Act of 1996 (HIPAA), as well as the Social Security Act, to prohibit health insurers from engaging in genetic discrimination. Title II of GINA prohibits discrimination in employment because of genetic information and, with certain exceptions, prohibits an employer from requesting, requiring, or purchasing genetic information. The law prohibits the use of genetic information in employment decisions—including hiring, firing, job assignments, and promotions—by employers, unions, employment agencies, and labormanagement training programs.

This report provides background on genetic information, legal implications regarding the use of this information, and relevant laws. It also discusses the statutory provisions of GINA and the regulations regarding both health insurance and employment.

Date of Report: June 13, 2011
Number of Pages: 25
Order Number: RL34548
Price: $29.95

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