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Employee Benefits Security Administration

Fact Sheet

Genetic Information Nondiscrimination Act

EBSA plans to enhance health benefit security by publishing regulatory guidance regarding new consumer protections under the Genetic Information Nondiscrimination Act of 2008 (GINA), supporting the Secretary's good jobs for everyone policy.

Key Action: Interim Final Regulation

The Department's EBSA published joint interim final regulation on October 7, 2009 together with the Departments of Health and Human Services and the Treasury. The interim final rules provide guidance and clarifications regarding GINA's statutory provisions.

Key Concerns and Issues Addressed

The interim final regulation provides clarification regarding GINA's prohibition against discrimination in group premiums based on genetic information, its limitations on genetic testing, and its prohibition on collection of genetic information.

Background

GINA expands the genetic information protections included in the Health Insurance Portability and Accountability Act of 1996 (HIPAA). HIPAA prevents a plan or issuer from imposing a preexisting condition exclusion provision based solely on genetic information, and prohibits discrimination in individual eligibility, benefits, or premiums based on any health factor (including genetic information).

GINA provides that group health plans and health insurance issuers cannot base premiums for an employer or a group of similarly situated individuals on genetic information. (However, premiums may be increased for the group based upon the manifestation of a disease or disorder of an individual enrolled in the plan.) GINA also generally prohibits plans and issuers from requesting or requiring an individual to undergo a genetic test. However, a health care professional providing health care services to an individual is permitted to request a genetic test. Additionally, genetic testing information may be requested to determine payment of a claim for benefits. There is also a research exception that permits a plan or issuer to request (but not require) that a participant or beneficiary undergo a genetic test. Additionally, GINA prohibits a plan from collecting genetic information (including family medical history) prior to or in connection with enrollment, or for underwriting purposes. An exception is included for incidental collection, provided the information is not used for underwriting.