Fact Sheet

U.S. Department of Labor 

Employee Benefits Security Administration 

September 2009 

The Genetic Information Nondiscrimination Act of 2008 (GINA) 

The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits discrimination in 

group health plan coverage based on genetic information. GINA is effective for plan years 

beginning after May 21, 2009 (January 1, 2010 for calendar year plans). Regulations 

implementing the provisions of GINA were made public on October 1, 2009. 

Builds on HIPAA’s protections. 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). 

Additional underwriting protections. 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.) 

Prohibits requiring genetic testing. 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, although the regulations make clear that the plan or issuer may request only the minimum 

amount of information necessary in order to determine payment. 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. 

Restricts collection of genetic information. GINA also prohibits a plan from collecting genetic 

information (including family medical history) prior to or in connection with enrollment, or for 

underwriting purposes. Thus, under GINA, plans and issuers are generally prohibited from 

offering rewards in return for collection of genetic information, including family medical history 

information collected as part of a Health Risk Assessment (HRA). The regulations provide 

several examples illustrating GINA’s application to HRAs. 

An exception is included for incidental collection, provided the information is not used for 

underwriting. However, the regulations make clear that the incidental collection exception is not 

available if it is reasonable for the plan or issuer to anticipate that health information will be 

received in response to a collection, unless the collection explicitly states that genetic 

information should not be provided. 

Other protections. GINA also contains individual insurance market provisions, administered 

by the Department of Health and Human Services’s Centers for Medicare & Medicaid Services, 

privacy and confidentiality provisions, administered by the Department of Health and Human 

Services’s Office for Civil Rights, and employment-related provisions, administered by the 

Equal Employment Opportunity Commission (EEOC).